DIALOGUE Articles

Vacation Suggestions: A Rich Legacy of History Worth Visiting (Part One)

by Peggy Chong, Albuquerque, New Mexico

As DIALOGUE readers know, my articles are often about blind people who passed on a long time ago. Although many have left a mark on our lives, little remains of their memories, where they lived and worked or the places they built. When thinking of historical sites related to blind people, we tend to think of the schools for the blind, Homes for the Blind, agencies (both private and public), or maybe Coupvray, France–the birthplace of Louis Braille.

For me, a vacation based on the hidden, yet rich, history of the blind of the United States takes a whole different turn. We have many choices, some almost unknown.

We start on the west coast of the United States with a trip to Livermore, California, and Ravenswood. The Ravenswood Historic Site, one of Livermore’s historical landmarks, was built by Christopher A. Buckley, Sr., who is known as “The Blind Boss” of San Francisco politics in the 1870s and 1880s. Buckley was blind much of his adult life, yet he controlled who was elected, got public jobs and benefited financially from his political clout in San Francisco. Ravenswood Historic Site is also one of the larger early vineyards in the Livermore Valley.

When you visit this lovely 1885-era Victorian country estate in Livermore in August, there is an old-fashioned Ice Cream Social. During the holidays, there are special Victorian Yuletide celebrations. To join the free public tours or to learn more information about the estate of Christopher Buckley, visit www.larpd.org/rentals/ravenswood.html.

Now, off to St. Louis, Missouri, where they have several venues that host exhibits from time to time about Joseph Pulitzer. We have all heard of the Pulitzer Prize–but did you know that Joseph Pulitzer himself was blind?

As a young man, Pulitzer wanted to be a soldier, but he was rejected by the Austrian Army, the French Foreign Legion and the British Army because of his poor eyesight. The USA’s Union Army in 1864 was far less picky. Pulitzer was recruited from Hungary to serve in the Civil War, which is how he came to America.

The Missouri History Museum has a bust of Mr. Pulitzer and, on the centennial of his death, they hosted a presentation of his life. As he was a famous Missourian, they will have information included in many of their exhibits regarding Mr. Pulitzer’s impact on the state of Missouri. A drop-in at the museum could be fun. They are located at 5700 Lindell Boulevard, St Louis, Missouri 63112.

The Pulitzer Foundation for the Arts, 3716 Washington Boulevard, St. Louis, Missouri 63108, usually does not have an exhibit to promote the on-site museum and the man who funded it, but it will give you a taste of the deep passion that Pulitzer had for the arts. (The building, currently undergoing a renovation, will reopen in May, 2015.) After his death, many art museums across the country benefited from his generous gifts of paintings and sculptures, yet few people would think of a blind person as a major collector of art. Their web site is www.pulitzerarts.org.

Writing about dead people often means a trip to a graveyard. I find graveyards fascinating and fun, and I hope you will as well. Let’s now go to Milwaukee, Wisconsin, and the Forest Home Cemetery.

William Cramer was the founder of the EVENING WISCONSIN, now the WISCONSIN JOURNAL. Not only blind in adulthood, but deaf as well, he built the newspaper and was its editor from 1847-1905, the longest concurrent editorship of a newspaper in the country.

William Cramer, born in New York, was a man who loved learning. In his lifetime, he became known as a walking encyclopedia to the residents of Milwaukee and was active in politics as well. At the age of 52, he married a 21 year-old woman who, after his death, took over the paper before she sold it to a shell company for the William Randolph Hearst newspaper chain. As a side note, Cramer Street in Milwaukee is named for William’s brother, Elephalet, not for him, as some may tell you.

A plaque at the cemetery bears an old photograph of the MILWAUKEE JOURNAL, where Mr. Cramer worked for so many years, as well as a picture of him. Once a year, around Memorial Day, the Forest Home Cemetery has a walking tour of the graveyard, with volunteers dressed in period costume, telling the story of the person whose grave they are standing by. Each year, William Cramer continues to be a featured character, telling his story to those who tour the graveyard. The cemetery has a plaque for William Cramer hanging in the “Halls of History” building, which has a section in the lower level for famous Milwaukee people, often beer barons (Pabst, Blatz, etc.) as well as others. Forest Home Cemetery is located at 2495 West Forest Home Avenue, Milwaukee, Wisconsin 53215.

Then it’s off to Ann Arbor Michigan, for a visit to the Chemistry Building at the University of Michigan and a walk past the nearby Edward DeMille Campbell houses in the Washtenaw Historical District. Mr. Campbell was a blind chemistry professor at the University of Michigan, and his historic homes are just a few blocks from campus.

Edward Campbell was a young, promising chemistry professor whose family had much to do with the early years of the University. One spring, just two years into his teaching career, an experiment in his classroom blew up and glass flew into his eyes, causing permanent blindness. Professor Campbell took a few days off from school before the spring break that was about to begin and was back at his desk teaching for the rest of the school year.

Mr. Campbell’s career at the school and in chemistry was remarkable by any standards. His students remembered him with love and respect as he had made such a strong and lasting impact on their lives. A large plaque in the chemistry building denotes his importance to the Chemistry Department and to the University.

Both of the Campbell homes are currently in use as single-family homes. The first home Mr. Campbell had built in Ann Arbor, before he was blinded, is located at 1310 Hill Street.

The second, located at 1555 Washtenaw Avenue, was built after he was blinded. It was said that Edward had special features built to make navigating his home easier for a blind person, but there is no indication what those features were. This home is currently owned by Robert and Holde Borcherts. Mr. and Mrs. Borcherts have assumed the role of caretakers for this landmark on the Michigan Historic Register. They are open to private, pre-arranged tours, which can be arranged by calling Holde Borcherts at 734-663-6758.

The home is more commonly known as one of the designs of famous architect Albert Kahn, who designed innovative concrete factories and motor plants for the automobile industry. Mr. Kahn was a friend of Mr. Campbell’s before he became famous.

EDITOR’S NOTE: To be continued in the next issue.

Finding, Hiring, and Using At-Home Caregivers

by Sue Tullos Duffy, Champaign, Illinois

When my husband, John, called me from the hospital and said he couldn’t stand being transferred to a third nursing home, I knew I had to find caregivers fast. This was a completely new experience for me, but I had no time to fret. John would leave the hospital on Saturday, so I had only three days to get help. We used round the clock caregivers from March, 2012, until March 6, 2014, when John was hospitalized for the last time.

In October, 2011, John contracted C. diff, a potentially fatal and difficult to treat intestinal virus, which was finally cured in June, 2012. Three months later, he was diagnosed with terminal, advanced, metastatic prostate cancer.

I cared for John alone from October, 2011, until his first hospitalization on January 5th, 2012. I became completely exhausted and realized I could never do this again. Since I have fibromyalgia and arthritis in addition to being totally blind, I could not do turning or moving. Finding at-home caregivers, therefore, was essential for both of us, since neither of us had family who could help.

When I called my church for possible referrals to caregiving agencies, the secretary recommended a company which turned out to be far too expensive. This agency, however, suggested a second, more affordable company, and I called to set up the initial interview. The next morning, the owner and the case manager came to our home to talk with me and then went to the hospital to interview John. They were matter-of-fact about my blindness and promised to inform the aides about it before they arrived for work. The owner assured me that the company was bonded and that all the certified nursing aides had passed background checks. This is extremely important, since the caregivers work in the home for many hours, sometimes when you and the patient are both asleep. The company we used did not take Medicare, Medicaid, or long-term care insurance, but this policy varies. Hourly rates in our area range from 16 to 25 dollars, but holiday and weekend rates are higher.

As the name implies, Certified Nursing Aides have taken requisite coursework either during high school or at community college, and many go on to become registered nurses. Their duties may differ slightly from company to company, so be sure you know what your particular CNAs can do. For instance, CNAs cannot give medication but can place it in front of the patient for him to take himself.

When John went to the hospital, the CNA followed in her car, but could not ride in the ambulance. Once John was admitted, she had to leave the hospital, since he was legally under the doctor’s care at that point. She accompanied us to scheduled appointments, but her job was walking with me from place to place, and, if we stayed all day, going with me to the cafeteria for lunch. I became a client of the agency myself so that the aide could be paid for assisting me.

At home, the CNAs did light housekeeping, such as cleaning the bathrooms and helping me label cans in braille. They could run errands and do grocery shopping if we paid their mileage, but their major duties involved caring for John. They bathed, dressed, and toileted him, since he was confined to bed and could not transfer into his wheelchair anymore. I cooked, shopped, did laundry, scheduled doctor’s appointments, and spoke with the advisory nurse when unforeseen problems, like a sudden fever, occurred.

When John’s pain from his terminal cancer increased, and he had to take stronger pain medication, the aides and I, at the nurse’s request, kept a detailed chart about the dates, times, and amounts of his medications. When emergencies happened, the CNAs provided visual information for the advisory nurse, which was extremely helpful. Finally, when I became ill for two weeks in January, 2014, the CNAs prepared meals for both of us. We could never have survived without them.

Though the CNAs knew about my blindness beforehand, they really had no idea what to expect, especially at first. This was particularly true of the aides from foreign countries, who had only seen blind people begging on the streets or singing for money. The American CNAs were in a similar situation, though, since they had cared primarily for older blind people, who had not received any rehabilitation training, and who, many times, needed more help.

The CNAs were stunned that I could walk around my own house without getting lost and were amazed that I knew how to cook. Since all of them offered to help me in the kitchen, I know they were afraid that I would hurt myself or catch something on fire. Some of them actually watched me while I cooked, which made me nervous. But when nothing happened, everyone calmed down.

Since the aides and I worked so closely together, our relationship was quite informal, and we called each other by our first names. However, I did complain about one CNA who called me “dear” and “honey” constantly. Some of the CNAs chatted too much on their cell phones, and one talked to her boyfriend all day and cried. At my request, this person was replaced. A few aides fell asleep at night and had to be awakened. One balked when I asked her to make a bed. These behaviors, though, were the exception. Most of the CNAs were kind, conscientious, knowledgeable, and professional.

Since caring for a dying patient is hard work for everyone involved, here are some ways to make life easier. Be sure to label the microwave in both print and braille. The CNAs bring their own meals and beverages and will need to heat them. It’s thoughtful to have coffee or tea available, especially for the CNA who works from eleven PM to seven AM. If a CNA accompanies you to the hospital, offer to pay her parking fee, as you would for any other driver. If, while your family member is being treated, the CNA takes you to the cafeteria for lunch, offer to buy her meal, too. If she declines, at least you’ve made the gesture. In bad weather, let her park her car in your garage. If your family orders dinner in, ask if she wants something. Offer her a slice of dessert. Ask about her family. Above all, thank her for jobs well done, and, when appropriate, praise her to her supervisor. CNAs make very little money, but their contributions are priceless.

Taking care of a terminally ill person over many months is both physically and emotionally demanding, so remember that this is a team project, even though you’re paying for the company’s services. Give everyone some slack, including yourself, but report any major problems promptly.

Despite the best will in the world, there will still be some trying days. Sometimes, John was angry, I was teary, and the aides were exhausted. At other times, the three of us ate apple pie and watched old movies when we had caught up on work. Once, one of the aides beat John at checkers, and three CNAs brought us sweets at Christmas. Two of the aides, the case manager, and the owner of the company all came to John’s funeral, where we hugged and cried as we ended our journey through a stony and challenging valley.

What’s New and Where to Get It

Compiled in part by Jackie Ohime, LaPorte, Indiana

EDITOR’S NOTE: This column is provided as an informational service to readers. As with all purchases, readers are expected to investigate thoroughly before making transactions. Send items for possible inclusion in this column to magazine@blindskills.com.

Publications

National Braille Press offers a new publication entitled OUT AND ABOUT: OUR FAVORITE TRAVEL APPS. The book includes two dozen “tried-and-true travel apps” that are, in one way or another, related to moving around–from moving about town to moving around the world. There are even apps for the armchair traveler. With these apps, the publisher’s description suggests that “even the most timid traveler can grab an iPhone and head out with confidence.” Every app described in this book has been tested with all iPhone models beginning with the 4s and the iOS 8 operating system. Only those apps deemed usable and accessible are included.

OUT AND ABOUT: OUR FAVORITE IOS TRAVEL APPS costs $9 and is available in Braille, DAISY CD, DAISY download, eBraille (CD), eBraille (download), Word File (download), and Word File (CD). To purchase this book, contact National Braille Press at 888-965-8965 or visit www.nbp.org.

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Choice Magazine Listening (CML) is a recorded quarterly anthology available free to US residents who are blind or visually impaired, or who are otherwise unable to read standard print. CML editors select unabridged articles from more than a hundred magazines and literary journals, and their product is professionally recorded for distribution on digital Talking Book cartridges. Eligible readers can download the latest issue or older issues back to 2006 through the CML website, choicemagazinelistening.org. For sign-up information or download instructions, call toll-free 888-724-6423.

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The JOURNAL OF VISUAL IMPAIRMENT & BLINDNESS (JVIB) has resumed publication in print. A one-year individual print subscription costs $129. It includes six print editions yearly, sent by mail, as well as online access to JVIB. To subscribe, visit www.jvib.org.

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The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) offers a series entitled A YEAR OF HEALTH PLANNERS. These multicultural planners offer information to help maintain health and manage conditions of the bones, joints, muscles, and skin. Patients should use the planners to write down the medicines and supplements they take each day, record any new symptoms they have, bring the planner with their written questions when they visit health care providers, and use the included stickers as reminders. Planners in the series include: African American Health Planner; American Indian / Alaska Native / Native Hawaiian Health Planner; Asian American / Pacific Islander Health Planner; and the Hispanic / Latino Health Planner (bilingual). For more information, contact NIAMS at 877-226-4267. The planners may also be downloaded from http://niams.nih.gov//multicultural/planners.asp.

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Products and Services

Blind Alive is a new company that provides workouts specifically designed for people who are blind. All exercises are described with the intention that blind participants will be able to follow them. Titles include Boot Camp Workout, Sculpting with Weights Level One, Sculpting with Weights Level Two, Cardio Level One , and Cardio Level Two. The workouts are available as a digital download from Blind Alive, and some workouts are available on CD from Amazon. For more information, leave a message for a return call at 570-212-9979 or visit www.blindalive.com.

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General Electric is selling a kit of braille overlays as an accessory to its new Artistry Electric Range. Working with students of the Kentucky School for the Blind (KSB), company engineers and designers developed the overlays to make the range’s oven and cooktop controls accessible to blind customers. Many of today’s ranges have smooth push buttons which make nonvisual operation difficult or impossible. According to a company product release, “the ADA-compliant Artistry range offers front-control knobs that are within reach and a straightforward design that lends itself to a braille accessory kit.” On the advice of the KSB student-consultants, the cooktop was given a “low,” “high,” and “off” heat setting, and the oven was configured with settings marked “low,” “350 degrees,” and “broil.”

The estimated retail cost of the Artistry range is $599. The braille kit costs $15.75 and comes in black (braille kit number 4-A034) and white (braille kit number 4-A024) to match the range. To locate a dealer, visit geappliances.com or call the GE Answer Center at 800-626-2000.

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Visus Labels, Inc., is marketing a system of adhesive labels with tactile patterns intended for identifying food containers, medicines and other household items. The Visus Touch Classification Kit is intended for people who are not able to use braille. Each kit contains 90 tactile labels and a set of instructions for classifying and marking common types of household items. A kit containing paper labels sells for $34.95, while a heavier plastic option costs $39.95. For more information, telephone toll-free at 800-310-4517 or visit their website visuslabels.com.

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Hadley School for the Blind has a new six-lesson course called TRANSITIONING TO UNIFIED ENGLISH BRAILLE. This course provides a structured approach to learning the differences between EBAE (English Braille American Edition) and UEB. To enroll in this course (currently very popular since 2016 marks the beginning of UEB braille production in the US), contact Hadley Student Services at 800-526-9909 or visit the Hadley website, www.hadley.edu.

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National Braille Press offers new braille bracelets and pendants, including a silver or gold-plated cuff braille bracelet with the inscription “Never Give Up,” a silver or gold-plated cuff braille bracelet with the single word “Love,” a gold or silver-plated pendant with the inscription, “The Key is to Believe,” and more. To purchase, contact National Braille Press at 888-965-8965 or visit their website www.nbp.org.

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The cable and internet provider Xfinity offers “voice guidance” and video description to some customers. The voice guidance on the X1 Entertainment Operating System announces on-screen text and options as the user navigates with the remote control. Voice guidance support is available for the Main Menu, Guide, Saved, On Demand and Settings pages of the X1 set-top box. Video description is also available on select programs as they air live. Currently, Xfinity On Demand and the Xfinity TV Go web and mobile platforms do not offer content with video description. For more information email accessibility@comcast.com or visit www.comcast.com/accessibility.

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American Printing House for the Blind (APH) offers Tactile Clothing Tape enabling braille readers to keep colors and other information about clothing and linens just where they need it. The brailled information remains after going through automatic washers and dryers and even holds up under an iron, as long as a layer of fabric is kept between the iron and the label. The tape allows users to include as many personalized abbreviations as they wish. Create labels with names, laundry instructions, matching information, etc. Each package contains two 1/2-inch roles of tape, two packs of sturdy quilting safety pins and instructions in both braille and print. The cost is $59. Contact APH at 800-223-1839, or visit the APH website at www.aph.org.

APH has launched a Products Showcase Shopping Site, featuring 40 of its most popular consumer products. Examples include the Book Port DT Talking Book player/recorder with its large speaker, the VisioBook electronic magnifier, and the Color Test II talking color identifier. The new website offers an uncluttered approach to product presentations and has new shopping features intended for ease of use. To check out this new website, visit http://showcase.aph.org.

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The Bureau of Engraving and Printing (BEP) provides free money identifiers to blind and visually impaired individuals. Applicants no longer need to be NLS patrons to apply. For an application, call 844-815-9388 or visit the following websites: www.moneyfactory.gov/uscurrencyreaderform.html orwww.loc.gov/nls/other/currencyreader/index.html

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ABiSee, Inc., and Freedom Scientific have announced a merger of the two companies as of April, 2015. ABiSee products will eventually be marketed, sold and supported through Freedom Scientific’s marketing and dealer network. It was not immediately clear whether, or for how long, ABiSee would continue to have an independent sales and support presence. Customers who have difficulty contacting ABiSee may want to take ABiSee sales or support questions to alternate contacts at Freedom Scientific.

ABiSee, Inc., has released the newest version of the Eye-Pal Ace Plus. The Eye-Pal Ace Plus is a WiFi enabled stand-alone portable scanner and reader, allowing users to send and receive emails, download books from Bookshare.org, and, with the new release, download news publications from NFB Newsline. Text being scanned or downloaded is read aloud by the device and displayed in magnified font on the built-in 10-inch screen. Eye-Pal Ace Plus is also compatible with some USB-connected refreshable braille displays, giving readers access to print material in braille. The compatible refreshable braille displays are Freedom Scientific Focus 14 and 40, ALVA BC640, APH Refreshabraille, HIMS Braille Edge, Baum SuperVario, HumanWare Brailliant 40 and HumanWare Brailliant BI 40. At the present time, it is not compatible with Bluetooth. To learn more, call 855-354-4080 or send an email to support@abisee.com.

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Freedom Scientific offers the TOPAZ PHD, a portable version of its TOPAZ desktop video magnifier, available in 12-inch or 15-inch models. With its wide magnification range, configurable screen color modes, and adjustable reference lines and masks, the new TOPAZ PHD aims to provide portable comfort and productivity with less bulk than stationary desktop magnifiers.

Both models include a Freeze Frame to hold an image on-screen and a Find function to quickly zoom out to an overview, locate the next area of interest, and zoom back in to the magnification setting previously in use. The TOPAZ PHD also offers an SD card slot to save images and a USB port to connect to a PC and work with documents and applications using GEM software. For more information contact Freedom Scientific at 800-444-4443 or visit their website at www.freedomscientific.com.

HumanWare is introducing a new version of its standalone GPS solution, the Trekker Breeze. While retaining the controls and command structure of the original Breeze, the Trekker Breeze Plus offers much quicker acquisition of GPS satellites and more signal stability in so-called urban canyons, where tall buildings can create echo effects that produce inaccurate or confusing GPS location information. The Breeze Plus also offers improved battery performance and more flexibility in large open areas, such as university campuses where street maps are not available.

The new Trekker Breeze Plus costs $799. Owners of the original Trekker Breeze may contact their HumanWare dealer to arrange for a full upgrade costing $199. For more information, visit humanware.com/breeze, or telephone HumanWare toll-free at 800-722-3393.

Vacation Suggestions: A Rich Legacy of History Worth Visiting (Part Two)

by Peggy Chong, Albuquerque, New Mexico

My articles are often about blind people who passed on a long time ago. Although many have left a mark on our lives, sometimes little remains of their histories, where they lived and worked or the places they built. When thinking of historical sites related to blind people, we tend to think of the schools for the blind, Homes for the Blind, agencies (both private and public), or maybe Coupvray, France–the birthplace of Louis Braille. For me, a vacation based on the hidden, yet rich, history of the blind of the United States takes a whole different turn. We have many choices, some almost unknown.

Let’s head southwest into New Mexico. First, we will travel to Las Vegas, New Mexico. We remember Owen Shillinglaw, a blind man who grew up there and opened his own lumberyard and also sold gas and coal. Located at 700 Railroad Avenue in Las Vegas, Shillinglaw Heating and Plumbing has recently gone out of the hands of Owen’s descendants, but the business still bears his name.

Owen had a birth defect that made blindness, which occurred when he was in high school, the least of his physical disabilities. Determined to make a future for himself and not be dependent on his family, he worked hard for others in lumber yards until he bought his own. Over the years, his small business became a major enterprise in Las Vegas, causing him to employ not only those in the community who were the best at plumbing and the like, but many members of his family to help with the promotion and the books, while he went out on jobs, public relations events and negotiations that brought in new accounts and projects.

Owen died at work, of head injuries after an accidental fall. Because his death was so unexpected, the firm brought family from Minnesota to keep up with the orders and jobs that Owen had already secured. His niece still lives in Las Vegas.

While in Las Vegas, you can stop by the old Atchison Topeka and Santa Fe Engine 1129 on display at Grand and Mills Street. Owen was one of the prominent men who raised money to bring the old engine to Las Vegas and restore it. The intersection today is much more traveled than it was back when the engine first came to town, but there is an area to pull over, park and read the plaque.

Then it’s off to Roswell and to the Elizabeth Garrett house (102 South Lea Avenue). Ask any New Mexican, native or just an immigrant, to sing the New Mexico State Song, and you are likely to get some hemming and hawing–and maybe some humming. I had to look up the words, having not yet committed them to memory. Some will actually know that it is called O FAIR NEW MEXICO, and those who do can usually tell you that it was written by the daughter of Sheriff Pat Garrett, the lawman who shot Billy the Kid.

But few will know that Elizabeth Garrett was blind, taught at the New Mexico School for the Blind, gave music lessons in her home and much more. Her residence is currently a private home and not on any formal tours. However, on a trip to Roswell, it is close to many of the other tourist attractions and known to many of the tour guides in the area who can direct you to the house, which Elizabeth Garrett had built for herself.

Over in Texas, make a stop at Texas Southern University’s Thurgood Marshall School of Law in Houston. There we find the Earl Carl Institute for Legal and Social Policy, established in 1992 and named after Earl Carl, the blind, black law professor and founding member of the law school.

Carl led a quiet life, but with his strong civil rights convictions and education, will and drive, he made changes to the biased and discriminatory laws of the country. The Institute works to educate law students on advocating for change and providing leadership in shaping public opinion.

Staying in the south, our next stop is the birthplace of Helen Keller, Ivy Green. The plantation is located at 300 North Commons Street West in Tuscumbia, Alabama. The museum is open year-round, six days a week. It is closed on Sundays and any holidays, and the price of admission is only $6. A tour of the grounds and the buildings is available.

During the last week of June, the museum hosts a Helen Keller Festival that in 2014 included weekend performances of the play, THE MIRACLE WORKER. For more information, check out their website at www.helenkellerbirthplace.org.

Now moving up to the New England area, we meet John B. Herreshoff of Rhode Island. He was the oldest of four blind siblings from a large family and became the most famous. John loved building boats and, after he lost his sight in his teens, the family encouraged him to continue.

By the age of 22, he had formed his first company to build yachts. John managed the business and was in charge of promotion, contracts and the like. He brought in many of his other talented siblings and extended family, all of whom had grown up around boats, to help improve the company’s designs and to take the lead in boat and submarine construction. From there, the Herreshoff name became known worldwide. Many of the yachts that won the America’s Cup were Herreshoff boats.

A museum that is more than just a building honors the Herreshoff boats. Here, in part, is what their website has to say:

THE HERRESHOFF MARINE MUSEUM/AMERICA’S CUP HALL OF FAME is dedicated to the education and inspiration of the public through presentations of the history and innovative work of the Herreshoff Manufacturing Company and the America’s Cup competition. The Museum, bordering beautiful Narragansett Bay, in Bristol, Rhode Island, is one of the nation’s most important historic maritime treasures. We regularly host classic yacht regattas, sponsor symposia on classic yacht design and restoration, and operate an outstanding sailing school for youth and adults. We celebrate excellence in design, innovation, education, and technology. Immerse yourself in exhibits about the Herreshoff Manufacturing Company, the America’s Cup, and the fabulous people and yachts that gained fame around the world. Participate in our extraordinary events and expand your horizons. Visit, join, and be a part of a great tradition.

During the summer, the museum is open seven days a week. Check their website at www.herreshoff.org for special events. During the fall and spring, they are open five days a week and close during the winter months. The museum can always be open for a special tour anytime during the year if you call 401-253-5000 to make arrangements. Currently, the museum does not have material in an alternate format, but they are working on it.

The Museum is located at One Burnside Street, at the corner of Hope Street (Route 114) and Burnside Street in Bristol, Rhode Island, one-half mile south of the center of Bristol and one-and-a-half miles north of the Mount Hope Bridge. The Museum is a 25-minute drive from Providence, Newport, or Fall River.

As we know, blind people are a cross section of society. Some led normal lives, like Owen Shillinglaw. Some were famous because of their blindness, like Helen Keller. Some were famous because of the contributions they made to an industry, like John Herreshoff.

We all should celebrate and remind ourselves that, although so many blind people throughout history led sad, frustrating or mostly undocumented lives, there is much to celebrate from those blind people who took advantage of the chances they found–or made.

By reminding ourselves and society in general that these people did exist and were blind, we may be able to reduce the unemployment rate of blind people and also to encourage those going blind later in life to stretch their wings.

You Can’t Fix Stupid

by Marty Klein, Woodstock, New York

I walked out of my house the other day to get the mail. My mailbox is on the road at the beginning of my driveway, about 50 or so feet away from my front door. I’ve made that little jaunt thousands of times in the 30 years that I have lived in this house, and I have never had a problem getting the mail–no problem in snow or rain, heat or cold, night or day. As I was pulling out the mail, my neighbor, whom I hadn’t seen in months since I left for the warmer winter in the South, pulled up in his car. He rolled down the window and said, “Need a hand with anything?”

I was initially stunned by his comment, but took the high road–shook my head politely and waved to him as I began to walk back to my house. He drove away.

I walked up the three steps to my front door, turned around and paused, thinking about what had just happened. My neighbor has known me for about 20 years, and after countless attempts to communicate with him about my ability rather than about my disability, he still sees me as constantly in need of help. I thought how amazing it was that after 40 years of being blind I still have to put up with that kind of nonsense from some people. A more normal response from him would have been something like, “Hi, Marty.” Or, “Welcome back home.” But that was not the greeting I received.

During the time that I’ve been totally blind, I have accomplished quite a lot–much more without sight than I ever did when I had sight. I’m happier and more relaxed as a blind person than I ever was when I could see. Yet no matter who I am and how much I have accomplished, there will always be a few people who will only see me as blind and in need of help. It’s frustrating on one level, but fascinating on another. This is a perfect place to use the slogan, “You can’t fix stupid!”

Thanks to my yoga practice and my desire not to engage with toxic negativity, I was able to smile peacefully at him and walk away quietly. But there is, I must admit, a part of me that would have liked to scream some very harsh, invalidating words to him at the top of my lungs.

It’s important for all of us who are blind or visually impaired to understand that some people will never see us as completely fine, able or happy. Some of those people will always feel sorry for us because we cannot see. Some will always see us as helpless and a burden to our families and communities. I often say prayers for those people: May God bless them and keep them … far away from me!

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Marty Klein is the author of the Amazon bestseller, THE ENLIGHTENED GAMBLER, THE HEART AND SPIRIT OF THE RISK TAKER IN ALL OF US. You can find out more about his work at www.theenlightenedgambler.com and on Facebook as The Enlightened Gambler. He has also produced a five-CD program, BEGINNING YOGA FOR THE BLIND AND VISUALLY IMPAIRED, with information at www.blindyoga.net.

Blind Person on Watch: Staying at the Hospital 24/7

by Sue Tullos Duffy, Champaign, Illinois

When my husband, John, entered the hospital on March 6, 2014, we both knew this would be his final stay. His pain and pain medications for metastatic prostate cancer had increased markedly, and he had been admitted for pain control on February 21, just fifteen days before.

On Friday, March 14, John’s breathing became difficult, and I told the nurse that I’d be spending the night. The next day, the oncologist told me to stay every night, since John didn’t “have much time.” We had no family who could help with watching, so that was totally up to me.

My vigil was challenging, lonely, and sometimes very scary. Every four days, I went home to shower, change clothes, do laundry, and meet with my reader to go through the mail and pay bills. But I never left without a nurse’s permission and a statement that it was relatively safe for me to go. An educated guess about John’s survival was all a nurse could give, but my duties at home were essential, and I was always back within two hours. I stayed at the hospital from March 14 until March 25, the day John died.

For those who expect to be in a similar situation, here are some helpful ideas.

Anyone staying at a hospital 24/7 must pack thoroughly. Unless you have transportation readily available, bring everything you think you might conceivably need. Besides the usual toiletries, bring towels and washcloths, since the hospital provides these only to patients. Pack all medications, both what you’re taking, and what you think you might need, such as aspirin for an unexpected headache. This is very important, since the hospital cannot furnish any medication to visitors. Also, bring all relevant phone numbers with you, since you may need to give these to a nurse. Include home, cell, and work numbers for everyone on your list. Although you can make only local calls from the patient’s hospital room, a nurse will make long distance calls for you if the need arises.

If you do not have both a health care and financial power of attorney (POA) for the person you’re watching, know how to contact the individual who does. If at all possible, bring copies of both POAs with you, in case this information is not included in the patient’s medical chart. If the patient becomes incompetent to make medical or financial decisions, the person with the POAs must be contacted.

On a more mundane note, be sure to pack some nonperishable snacks, in case you miss a meal, get hungry late at night, or just need some comfort food. I brought Snickers.

Be sure to bring something to keep yourself busy. If you don’t, the day will drag by, and you will need something else to think of beside the patient’s condition. This is especially relevant if your loved one can’t interact with you. By the evening of March 10, John was only minimally conscious and had stopped eating and drinking. Although he knew when I was in the room, he spoke to me only four times after that. This was very hard for me since John and I had always talked practically nonstop. As an escape, I read poetry, listened to Renaissance music, and immersed myself in a historical novel.

Whatever else you pack, don’t forget your earphones. These are a must, especially if your family member has a roommate, or the patient is critically ill and needs to rest. If you need to recharge your digital cartridge player, ask a nurse where an empty outlet is. Explain that you need to recharge your machine and that this won’t take more than an hour. If you bring a radio or cassette recorder, pack plenty of batteries.

As much as you can, keep empty outlets available for the medical staff, who may need to use them. Whatever you do, don’t unplug anything yourself, since each room has a computer where the nurses enter data.

If your faith is important to you or to the patient, it is fine to bring a meaningful religious symbol, such as a cross, Bible, Star of David or a Koran. Chaplains are available day and night should you or the patient need spiritual counsel. Protestant, Catholic, and Jewish chaplains are available at all large hospitals. Tell the nurse what your religious faith is, and she will call the appropriate person. If you come from another tradition than these and need religious comfort, let the nurse know. Medical staff and social workers are experts on community resources and will do their best to help.

If you travel to the hospital by taxi, request the cab driver to get an escort for you to take you to the room where you’ll be watching. This will not inconvenience him, because the hospital employs people for this purpose. They will probably see your cab drive up and meet it. If not, the driver can easily wave at someone, since escorts stand just outside the hospital, at least on sunny days. If no one is there to offer assistance, ask the driver to walk in with you to the front desk. Since he must either leave his cab running or find a parking place in order to do this, tip him extra if you can–even if he insists he doesn’t want the money–and regard this as an investment in goodwill.

When your escort arrives, he will probably have a wheelchair with him. The first time I was offered a wheelchair, I declined politely and explained that I could walk.

“We know you can,” my escort replied. “We’ve seen you, but wheelchairs are faster.”

Then I realized how busy these sighted guides are and always accepted a wheelchair after that. Once, when the elevator was full, my guide took me upstairs in an elevator for service employees only, which saved us both time.

On the way to the room where you’ll be staying, ask your escort to stop by the gift shop so you can purchase meal tickets. Get as many as you think you’ll need, and include weekend meals in your calculation. Gift shops are closed on Saturdays and Sundays. These tickets are inexpensive– about seven dollars each–and apply only to meals prepared in the hospital kitchen. Though other restaurants are on the hospital premises, they are often crowded, largely self-service, and do not deliver to patients’ rooms.

When you arrive at the patient’s room, ask to have the telephone and the nurse’s button placed near you if the patient isn’t using them. You especially need to have the nurse’s button in easy reach, in case the patient has a sudden crisis, like shortness of breath or a spike in temperature. Before your escort leaves, ask for and remember the number for dining service. When you order your meal, you can order for the patient, too, if he’s awake and hungry, unless a nurse tells you differently. Since hospitals usually don’t have braille menus, you will need to have the menu read to you and remember what things you’d like to order. If the patient can do this, accept gladly. Hearing the whole menu may not be necessary if you know generally what foods you like. Though nurses and volunteers are willing to help, and can occasionally read menus in free moments, they are very busy at meal times.

If you arrive hungry but have not heard the menu, ask dining service for something most restaurants prepare, such as a roast beef sandwich. If you wish to order something but aren’t sure it’s on the menu, explain to the dining service that you’re blind, and then ask your question. If you don’t, the dining service may send up another menu, which, of course, won’t solve your problem.

Remember that dining service representatives are often swamped with orders, so as much as possible, know what you want. Learn the names of the servers who bring your food. They will offer to help, since that is their job, so always thank them, even if you decline. I had to remind myself repeatedly that food servers had probably seen very few blind people, and most of these in a hospital setting. Since hospitals emphasize nutritious cuisine, heart healthy and diabetic choices are available.

For a blind person staying at the hospital 24/7, finding a bathroom is not only inconvenient, but potentially challenging. The bathroom adjoining the patient’s room is for patients’ use only, and could be needed by a maximum of four people. In most cases, unless a nurse tells you differently, you may use this bathroom only for washing your hands.

A nurse will be glad to show you where the public restroom is, but he or she may be hard to locate. You can press the nurse’s button, or go to the nurses’ desk, which you can identify by a ringing phone, medical conversation, and the sound of a typewriter. Either way, you’re probably in for at least a short wait. Since John was in a private room and was using a catheter, and the room next door was empty, I did not have this problem, but have faced it in the past. Most hospitals won’t let you shower, but I once stayed with John in an out-of-town hospital that did. Hospital policies aren’t written in stone, so always ask questions.

Because you’re staying 24/7, you will, of course, sleep in the patient’s room, on a cot if you’re lucky, or else in a chair. I slept in a chair from March 14 through March 24, and my slumber was erratic at best. Hospitals are relatively quiet at night, especially the oncology ward, but there is still more noise than you might expect. Telephones ring, elevators open and close, nurses come in to check patients’ vital signs, and doctors often arrive before six AM.

In addition, the patient you’re watching may wake up and be in the mood to talk, either to you or to a roommate. Since patients can make or receive calls at any time, your loved one or his roommate may decide to call home. Lastly, the person you’re watching may have a medical crisis, or at least a need for you to get the nurse.

Between sleeping in the chair, waking up to help John, and being awakened when the nurse came in, I was definitely slumber-deprived. On average, I slept about four to six hours per night, which was not nearly enough for me. John’s intravenous pain medications both ran out twice, and both beepers sounded at the same time. Since he hurt so badly, John always woke up moaning, so I stood beside his bed and talked to him until the nurse could administer both doses. Because she had to order the medicine from the downstairs pharmacy, there was a ten-minute wait whenever the beepers went off. In addition, one oncologist sometimes arrived at 5:30 AM, quizzing me about whether I’d eaten breakfast and urging me to go home and sleep in my own bed. He was very compassionate and answered all my many questions. Still, I was exhausted every day.

Because a patient’s privacy is zealously guarded, doctors and nurses will provide medical information to you only if the patient consents. In the best of all possible worlds, this should be decided and scanned into the patient’s medical chart long before the patient enters the hospital, but this is not insurmountable. If the patient is competent and conscious, he can give verbal consent for medical personnel to speak with you about his condition, but you can’t make medical decisions without a health care POA, which goes into effect only if the patient becomes incapable.

On Thursday, March 13, I used my health care POA to sign John into hospice, which I knew he wanted. With my financial POA, I sold some of John’s stock to pay funeral expenses and the last bill for our at-home caregivers. As John’s wife, I also became a hospice client in order to participate in their program for grieving families after John’s death.

On Sunday, March 16, I had a completely terrifying experience. About 5:15 PM, just after I’d finished dinner, John began gasping for breath. I had never heard such a frightening sound before, and I was sure he was dying. I pressed the nurse’s button and explained what was happening. Fortunately, she arrived quickly, listened a moment, then said very clinically that John’s gasping was “part of the process.” I was afraid to stay by myself, and asked the nurse if I should remain until John stopped breathing.

“That’s up to you,” she answered, in a completely detached tone.

“I’m not leaving,” I said. She left, and though my intellect understood that that nurse had many other patients to care for, my heart ached for someone to watch with me. I prayed for John until 7:45, when his breathing suddenly became normal. I was happy, of course, though I acknowledged on a soul-wrenching level that I would spend our final hour alone.

On Wednesday, March 19, the oncologist told me that John would die in a few days, and on Friday, March 21, I met with a local funeral director to plan the service. With the help of a friend from church, I selected a casket and prayer cards, which Catholics give as funeral remembrances, and provided information for John’s obituary. Our meeting was held in a hospital conference room, for which I was grateful.

Four days later, John died, and, again, I was by myself. John’s vital signs had been good that morning, and I’d promised the oncologist that I’d go home that night. Shortly after 6 PM, the nurse announced she was going to get her stethoscope, and I knew exactly what she was about to tell me. She listened a moment, then said very factually that John’s heart had stopped beating, and he was gone.

I will always appreciate the young health care technician who waited with me while the nurse made the appropriate phone calls. He told me that John had died in his sleep, that his eyes were closed, that his death was not difficult, and that he looked peaceful. I touched my husband’s cooling arm and gave him my last message.

“How did he last so long without food and water?” I asked the health care technician on our way downstairs, where he waited with me for my taxi.

“Because he was strong,” the young man answered, emphasizing the adjective. “Even with the cancer, he was strong.”

“Yes,” I agreed, knowing what he meant. I’d seen John’s strength for almost twenty-one years.