Winter 1998
COORDINATOR'S REPORT by Ruth D. Shapiro
It is more than 7 years since the Americans with Disabilities Act has been signed into law. What an achievement for people with disabilities to know that they have a legal right to access.
While the wheels of progress move slowly, we can all take pride in some of the achievements:
Access is still not a standard although much has been accomplished.
a.b.c. values the support of its contributors and friends. It is indeed rewarding when we hear comments as "I took your kit to the hospital and it really helped the staff know what to do," and "your travel kit made my trip so much more pleasurable."
It is only as there is continued and collective advocacy that people everywhere with hearing loss will have universal access.
WELCOME, PRESIDENT CLINTON
A warm welcome from the millions of Americans who, like you, have decided to wear hearing aids as a way of overcoming hearing loss.
We, at a.b.c., hope that your example will encourage other Americans to use the many assistive listening devices now available to meet the needs of everyday living - in employment, health, education, transportation, and the enrichment of life through cultural programs in the arts.
As you become aware of the many advantages of wearing hearing aids, we hope it will encourage you to expand opportunities for people with hearing loss through diligent enforcement of the Americans with Disabilities Act.
BROADWAY SHOWS CAPTIONED!
Captioning finally came to Broadway when a variety of shows were offered open captioned by the Theatre Access Project (TAP) of the Theatre Development Fund (TDF). Deaf and hard of hearing theatergoers and their friends were able to attend captioned performances of Barrymore, The King and I, Dr. Jekyll and Mr. Hyde, Jackie, Titanic, Beauty and the Beast, and Bring in Da Noise, Bring in Da Funk. For many in the audience, this was the first time they had been to a Broadway show in years, if ever. Through the efforts of Lisa Carling, Director of TAP, TDF has many more Broadway shows lined up with open captioning as well as sign language interpreters. Upcoming shows include The Life and The Diary of Anne Frank. The captioning is displayed on a portable LED screen with the script scrolled manually in synchronization with the dialogue and lyrics on stage. Don DePew, of Verba Volant Inc., a court and realtime captioning reporter, has been providing the captioning services.
For information on future captioned and sign language interpreted shows, contact
TDF
501 Broadway
New York, NY 10036
212-221-1103 (Voice)
212/719-4537 (TTY)
tap@tdf.org or www.tdf.org
OBITUARY - SUZANNE BROMBERG
It is with deepest sadness that advocates for better communication (a.b.c.) notes the death of its esteemed Co-Coordinator, Suzanne Bromberg. on September 20, 1997, who fought a losing battle against cancer.
Sue's hereditary sensorineural hearing loss precipitated her early retirement as a home economics teacher. (The noise of pots and pans in a large classroom made hearing increasingly difficult). Sue decided to devote herself to volunteering to assist others, who like herself, were struggling with hearing loss. She became a highly educated consumer and was exceedingly knowledgeable about assistive devices and legislation.
In the early 1980's she volunteered to conduct classes on assistive devices at the League. Always the educator and highly organized, she assisted hundreds of people with hearing loss to an improved quality of life.
When a.b.c. was founded, Sue joined a core group to co-chair the Health Care Committee. She helped develop the Health Care Kits for consumers and for health care facilities which are currently being used by the League's Center for Health Care Access (CHCA) and which have been widely distributed. She also provided training to health care facilities such as the A. Holly Patterson Home and Mercy Hospital.
Since 1995, she served as Co-Coordinator of a.b.c. and as chair of the Commendations Committee. In addition to her work at the League and a.b.c., Sue served as President for three two-year terms of the South Nassau Chapter of SHHH. She co-authored the booklet, "I Think I Have a Hearing Loss - What Should I Do" which was published by her chapter and distributed nationally. She also served as Downstate Coordinator for SHHH. Sue received awards from SHHH and was recognized for her contribution by receiving the League's Volunteer of the Year Award in 1988.
Sue had enormous energy and strength of purpose. She had extensive knowledge which she was willing to share and she energized others to help themselves. She always recognized the work of others and never failed to say thank you to each individual for whatever they did. Sue was a driving force behind a.b.c. and she leaves a void that will be hard to fill. She nurtured her family, her students, her garden, organizations and people.
Despite her disability, she did not retreat - she charged ahead. Nothing ever stood in her way. She worked so hearing loss didn't stand in the way of others. This work will continue - it is one of her lasting legacies.
Our condolences are extended to her husband Bill and her family.
BOOK REVIEW: HEAR - Solutions, Skills, and Sources for People with Hearing Loss by Anne Pope
A book that should be in the library of every hard of hearing person - and their friends and families - is now on the market. It is HEAR: Solutions, Skills, and Sources for People with Hearing Loss, by Anne Pope, an a.b.c. and League for the Hard of Hearing member.
Anne does a wonderful job of addressing both the practical and the emotional problems experienced by hard of hearing people. She explores the human impact of hearing loss through interviews with a variety of real people who have experienced it: a police officer, an orchard grower, the deputy director of a support group, the CEO of an investment research firm, a rock musician, a political district leader, a church counselor, and a world-renowned artist. Shorter anecdotes illustrating common problems and coping strategies are sprinkled throughout the book. Many of these interviews and anecdotes come from League members. Reading these stories makes all of us understand how other people have dealt with these problems---and that we can not only overcome hearing loss and live happy, productive lives, but do so more easily. In addition to the interviews, chapters on "Living With Hearing Loss," "Managing Your Stress and Fatigue," and "For Families, Friends, and the Future" provide a solid foundation for dealing with the psychological and emotional risks and the inevitable moments of doubt and depression that accompany hearing loss.
On the practical side, the book's information and advice are equally helpful. The author clearly explains the physiology of hearing and explains what can go wrong. (Mark Ross, the audiological consultant for the book, is well known to the League family.) She gives extremely important advice on how to protect the hearing you have. And then she tells how to cope with the loss that has occurred: A wealth of practical (and sometimes fascinating) hints and tips for hard of hearing people and their friends and families; strategies for parties, restaurants, travel, and other difficult situations; complete coverage of hearing aids and other assistive devices (including cochlear implants); what specialists to see, and what to expect from them; new skills that can be learned; how to find support groups; and a list of resources for hard-of-hearing people.
If you have experienced hearing loss or fear that you may, or if a friend or family member needs help or advice, this lively, attractive, and highly informative book should meet your needs. It is designed for easy accessibility, with lots of boxes and checklists. League members feature in many of the "people" pictures that appear in the book, and you are likely to see some familiar faces. In addition to the help Anne received from the League, the book was also written with the collaboration of Self Help for Hard of Hearing People.
HEAR: Solutions, Skills, and Sources for People with Hearing Loss, by Anne Pope, Dorling Kindersley, New York, 1997, $19.95. annejap@aol.com
Reviewed by Arlene Romoff
EDITORIAL: Exciting News
As the editor of this newsletter, it is gratifying to be able to report our activities and progress. However, there was no appropriate place in any of the articles in this issue for me to share my own personal news - very exciting news. As a person with a degenerative hearing loss, now at the profound level, I decided that the time had finally come to get a cochlear implant. I underwent the surgical procedure last October, and in December I received the computerized speech processor. I am delighted to report that I am doing very well with the device, and it is virtually changing my life. To put it simply - I can hear again! The rest is commentary.
I look forward to sharing experiences, resources and information regarding cochlear implants in future issues of this newsletter. Although much has been written about captioning, hearing aids, infrared and FM systems, TTY's, telephone relay service, and similar electronic devices that are helping people with hearing loss function, there has been very little written about cochlear implants, a technological miracle. I hope to include more information in future issues of this newsletter, so that people who can be helped by cochlear implants will have the resources to make informed decisions about this option for themselves. For now, the League runs a Cochlear Implant Support Group, which meets once a month. Call the League for information.
As always, you are welcome to submit questions or comments to this newsletter. We, at a.b.c., look forward to hearing from you!
Arlene Romoff
Editor, a.b.c. Reports
A TALE OF TWO CRUISES
by Joan Cassidy
Why are hard of hearing people so reluctant to ask for help? Why was I the only passenger on the Crown (it was the same on the Sky) to tell Princess Cruise Lines about my hearing loss and ask for assistance? The Princess brochure has a special section called Love Boat Access, and buried in the information about wheelchair access is a sentence saying they have "ADA packets" with cabin equipment for people with vision and hearing impairments. But I was the only person to ask for this equipment.
The Sky had 1,200+ passengers with an average age of 75 (my guess) and the Crown had 1,400+ with average age 55. So you know there were hundreds on board each ship with some degree of hearing loss. We saw many people wearing hearing aids and practically every time my husband, Neil, and I introduced ourselves and explained that I needed to speechread, it turned out that they, or someone they knew, had a hearing loss. We gave out so much advice we joked that Princess ought to pay us to conduct a workshop on How to Enjoy Your Cruise Even If You Have a Hearing Loss.
I told these people about the special equipment in our cabin. I had an Alertmaster for door knocker, phone ringer, fire alarm and cabin noise - announcements over the loudspeaker set this one off. Princess made sure our cabin TV had captioning and the Crown provided a VCR and a list of 20 captioned videos that I could request from our cabin steward. Our cabin on the Sky did not have the right electrical outlet for a VCR so the Communications Engineer checked out every video scheduled for the Movie Channel and marked the program so I knew which had captions. Unfortunately only 13 out of 75 had captions even though every single one is available at local video stores with captioning. I rent a lot of videos so I know!
On both ships I had a TTY in our cabin with another one at the Front Desk. On the Sky I was the first person ever to use their TTY. The Crown had already used theirs a few times and they actually dedicated one phone number at the Front Desk as TTY only. The Communications Engineer instructed them to call me a few times for practice and to make sure the system was working properly.
All of this didn't materialize by magic. I wrote to Princess months in advance with a very detailed explanation of what I would need and started the list with a request for "Table for two in a quiet corner or against a wall so I have a fighting chance of hearing my husband and our waiter, and where I won't have to worry about bumping into someone behind me." The first thing we did after boarding the ship was check out our table assignment and then we got in line to have it changed. On the Crown, the Maitre d' moved us three times until I was satisfied that was the best we could hope for under the circumstances. Later on the Purser told us they had plans to add acoustical material because so many people complained about noise in the dining room.
The naturalist on the Sky kindly let me have copies of some of the lectures she had in her computer. I also asked for scripts for onshore excursions but the tour guides were either unable or unwilling to provide them. However, Princess let us board each coach early so I could sit up front and try to lipread the guide. This was a real test of my skills since their English was heavily accented but at the very least we got a great view of the scenery.
For the Crown, I decided to skip the lectures but insisted that I must have help understanding the commentary for our transit through the Panama Canal. The Purser gave me a copy of David McCullough's The Path Between the Seas and a large, detailed map of the Canal. He also arranged for us to spend the day on the bridge which obviously had the best view possible. The only problem was that there were no chairs on the bridge so every few hours we would drag ourselves away from the view and take a rest and food break before going back to the bridge. In case you're wondering, we researched and booked these two cruises at rock-bottom bargain rates. We were not VIPs in an expensive suite.
All of these good things happened because I asked in advance, nicely, politely and with details, and because we took an active part in each situation. We didn't sit back and expect Princess to remember that I needed a quiet table, written information or front seat on the tour. I spoke up and asked each time.
One glaring omission on both ships was the lack of any kind of Assistive Listening System for the lounges and theaters. The cruise director on the Sky was very interested in getting something for the Show Lounge because he was going crazy trying to keep everyone happy with the sound level. Hard of hearing passengers kept asking him to turn the sound up and then he got complaints that it was too loud. The Purser on the Crown told us that the new ships have been designed with Assistive Listening Systems but Princess had not yet installed them in the older ships.
Both the Sky and the Crown had obviously been modified for people with mobility impairments so why not for those of us with hearing problems? If even half the passengers with hearing aids asked for listening systems you can be sure they'd be installed right away.
To get back to my original question. Why did nobody else ask for assistance? Ignorance is probably the main reason with misplaced pride and reluctance to "make a fuss" close behind. It's wonderful what can happen if you make an informed and reasonable request. Every time one of us asks for access, we educate the crew and other passengers and if enough of us keep doing this then hearing access will be as common as mobility access.
Joan Cassady, a founder and board member of Virginia's SHHH Nova West chapter, is Vice President of ALDA Potomac and a past board member of the Northern Virginia Resource Center for the Deaf and Hard of Hearing.
TELECOMMUNICATIONS COMMITTEE REPORT THE FEDERAL COMMUNICATIONS COMMISSION ADOPTS RULES FOR VIDEO CLOSED CAPTIONING
On August 7th, the FCC adopted an order establishing rules to implement closed captioning on all television programs in the United States. The original document is 148 pages long and is available at the FCC's website (www.fcc.gov). Briefly, the rules:
Joe Gordon - Chair, Telecommunications Committee
MUSEUMS & HISTORIC SITES OFFER SERVICES FOR PEOPLE WITH HEARING LOSS
by Toby Kurzband
The Cultural Affairs Committee of a..b.c. sent a questionnaire to more than 100 museums and historic sites, asking for information about their services for people with hearing loss. A checklist included such items as printed materials, captioning, assisted listening devices, sign language interpreters, TTY's, and amplified public phones. Some of the museums responded by sending brochures explaining their accessibility services. Others filled out the checklist, and in some cases, explained their plans for future improvements. A summary of the responses returned has been compiled and follows this article.
The Cultural Affairs Committee, co-chaired by Arlene Romoff and Dr. Paula Brown Glick, plans to update this information by contacting organizations that have not responded to the checklist and also by involving League and a.b.c. members to participate in this endeavor.
One way to get museums and historic sites to improve their services to people with hearing loss is to ask at the Information Desk what services are available, or to ask to meet with the Education Director regarding these services. Letters of inquiry and also letters of appreciation for the use of these services usually receive a prompt reply.
The Cultural Affairs Committee is also keeping in touch with new technologies which make access to these museums and historic sites more accessible to people with hearing loss. Recent innovations include realtime captioned lectures and the new hearing aid-compatible INFORM system available at some museums.
Beyond museums and historic sites, New York City offers more art galleries than any other city in the world. Admission is usually free or nominal. Openings of art exhibits usually offer an opportunity to meet the artists whose work is on exhibit. Information about museum and gallery exhibits are printed in The New York Times and other newspapers, and in weekly magazines such as New York, New Yorker, and Time Out. A new monthly magazine, MUSEUM, features reviews of current exhibits and a calendar of future events. (It is available free of charge at the Museum of Modern Art.)
Some people have found that their appreciation of art is enhanced by enrolling in a class in painting, sculpture or crafts. The Yellow Pages lists art schools which offer classes at different levels from beginner to advanced. Art classes are also available at the Art Students League, Educational Alliance, F.I.T., Parson School of Design, 92nd Street, Y, Senior Centers, and the Art departments of most colleges.
Toby Kurzband, a new member of the Cultural Affairs Committee, was an Art teacher at the Bronx High School of Science, taught Art Education at Pratt Institute and at the University of Rhode Island. He was also a docent at the New Museum of Contemporary Art, which he had to give up because of his hearing problems. Since his retirement, he has been giving slide lectures and teaching painting at college programs for older adults and at Senior Centers.
A summary of responses returned has been compiled and can be obtained by requesting the print version of this newsletter at abc@lhh.org
MOMA LECTURE SERIES FULLY ACCESSIBLE
The Museum of Modern Art (MoMA) presented a three-lecture series this past fall that was fully accessible to deaf and hard of hearing patrons. The series, entitled "From Goya to Hockney: Deaf Artists through the Ages," was given in American Sign Language by Dr. Deborah M. Sonnenstrahl, Professor Emeritus of Art History/Museum Studies at Gallaudet University. Realtime captioning, voice interpretation, and an FM amplification system were also provided, making this lecture series fully accessible to deaf and hard of hearing people.
The series was arranged by Francesca Rosenberg, Special Needs Coordinator at MoMA's Department of Education. The series got rave reviews by those fortunate enough to attend. Future series are planned. For information on accessible programming at MoMA, contact: Ms. Francesca Rosenberg, Special Needs Coordinator, MoMA, 11 West 53 Street, New York, NY 10019, 212-708-9864 (voice), 212-247-1230 (tty).
PAPER MILL PLAYHOUSE AND GEORGE STREET PLAYHOUSE CAPTION PRODUCTIONS
The Paper Mill Playhouse, in Millburn, N.J., will open caption select performances of all their mainstage productions for the 1997-1998 season. The theater, a leader and model of accommodation for people with disabilities, also provides sign language interpreted performances, and has an infrared listening system.
The shows at the Paper Mill Playhouse are always Broadway-quality, with magnificent stage sets and costuming. For information about the performance dates offering accessibility services, contact John McEwen at 201-379-3636(v), 201-376-2181(tty), or 201-376-0825 (fax).
The George Street Playhouse, a lovely intimate theater in New Brunswick, N.J., has also commited to captioning select performances of the remaining three productions of the season. Call the box office at 732-246-7717(v), 732-846-0825(tty) or 732-247-9151(fax) or email PMPDevelop@aol.com for show dates and ticket information. The theater is equipped with an infrared listening system.
ELDERHOSTEL HAS FM EQUIPMENT
As reported in the ELDERHOSTEL Winter '98 catalogue, Elderhostel has equipped a number of selected campuses with special FM equipment designed to improve and enhance the ability of hostelers with a hearing impairment to enjoy more fully their ELDERHOSTEL program.
At each of the campuses listed below, the faculty will wear a small, portable FM transmitter with a lapel microphone. Ten compatible FM portable receivers will be available for hostelers' use. If more than ten hostelers request receivers, they will be asked to share them. Once ELDERHOSTEL is better able to predict the demand for this equipment, it will arrange to have enough receivers for everyone who wants one. The receivers are easy to operate and provide substantial assistance to hostelers with a wide range of hearing loss.
Arizona
California
Georgia
New Mexico
Tennessee
"HANDS ON" CULTURAL CALENDAR AVAILABLE
HandsOn, a non-profit organization that provides cultural opportunities for people who are deaf, offers a free Cultural Calendar of events. The monthly calendar lists cultural events in the NYC metropolitan area that are either sign language interpreted or captioned. This includes theater, movies, museum tours and lectures. If you would like to be added to their mailing list, contact HandsOn, 131 Varick Street, Room 909, New York, NY 10013-1210 2112-627-4898 (v, fax), 212-627-1070 (tty), or HandsOnNYC@aol.com
TTY PAY PHONES ON THE GARDEN STATE PARKWAY
Good news! All the rest areas on the Garden State Parkway in New Jersey are now equipped with TTY pay phones, as well as amplified pay phones. The phones were installed this past summer, and are located in the services building at each rest area. Joseph E. Buckelew, Chairman of the New Jersey Highway Authority, which oversees the Garden State Parkway, responded quickly to a consumer suggestion that TTY pay phones be installed at the rest stops. More signs advising of the availability of these phones is planned. Right now there is only a logo sign over the TTY pay phones, so those not aware that they exist may miss them. If you do use the phones, write us at a.b.c. to tell us about it!