Summer 1998 Issue
Editorial Staff: Editor-in-Chief: Arlene Romoff
a.b.c. Executive Board: Coordinator: Ruth D. Shapiro, M.A.
Administrative Affairs: Lois Beadle, Chair
Cultural Affairs Committee: Arlene Romoff and Paula Brown Glick, Ph.D., Co-Chairs
Health Care Committee: Ruth R. Green and Orin Kaufman, M.D., Co-Chairs
Restaurant Committee: Belle Hammerschlag, Chair
Senior Centers: Ruth R. Green, Chair
Telecommunications Committee: Joseph Gordon, Chair
Travel Committee: Ruth D. Shapiro, Chair
League Representatives: Keith Muller, Executive Director
Lise Hamlin, Access & Advocacy Coordinator
Amy Hohn, Director of Volunteers
Justin R. Cristaldi, Webmaster
CONTENTS
Clearview Movie Theatres Schedule Open Captioned Movies
EDITORIAL: Somebody Should - Somebody Did - Everybody Can
Book Review
CHCA at the League for the Hard of Hearing
Travelin' Ears by Ruth Shapiro
Cochlear Implant Information Resources
Lincoln Center Captioned
Mona Lisa's Smile - A Clue to Speechreading
Courtroom Access Update
Cultural Affairs Committee Holds Consumer Workshop
CLEARVIEW MOVIE THEATERS SCHEDULE OPEN CAPTIONED MOVIES
The Clearview Cinema Group Inc., which has 37 theaters in New York and New Jersey, is now running open captioned first-run movies once a month in two of its theaters. Beginning last May, the open captioned showings have been scheduled for the third Monday of the month at the Bellevue Cinema in Montclair, NJ, and the following Wednesday at Clearview's Bergenfield (NJ) Cinema. This is the first time regularly-scheduled open captioned movies have been shown in New Jersey, an important step in making first-run films accessible to deaf and hard of hearing people.
Open captioned films are identical to the prints viewed at regular theaters with one exception - these movies have been enhanced with easy-to-read captions that include dialogue and descriptions of sound effects. The Americans with Disabilities Act (ADA) requires that Assistive Listening Devices (ALDs) be available to movie-goers. While ALDs are able to address the needs of a segment of the population with mild to severe hearing loss, they don't provide adequate access for most people with more profound hearing loss.
A. Dale Mayo, Clearview's President and Chief Executive Officer stated, "Cleaview Cinemas are focused on being active and supportive members of the community in which we operate, as well as the community-at-large. In our effort to bring neighbors to the movies, the captioned film program addresses a largely under-served segment of the population and is illustrative of our deep interest in meaningful outreach to our neighbors. . . . We are delighted to initiate the first regularly scheduled captioned films in the State (of New Jersey) and hope that this effort will enable entire families to share in the timely and wholesome experience of community-based movie entertainment. Admission to these films is open to anyone. It is not only for hard of hearing individuals."
In order to accommodate deaf and hard of hearing movie-goers, Clearview has started training theater staff in the basics of sign language and has developed box office procedures and concession menus that allow for easier communication. Clearview has also tapped into the communication networks of several advocacy groups.
The open captioned films that Clearview uses are the product of a joint effort of major film studios and Tripod Captioned Films, a not-for-profit distribution unit of the Tripod School, in Burbank, California. Complete schedule information for all open captioned movies is available from:
TRIPOD Captioned Films
1727 West Burbank Boulevard
Burbank CA 91506-1312
Phone 818-972-2080 V/TTY Fax 818-972-2090
EMail info@tripod.org Website www.tripod.org
Clearview's Bellevue Cinema (973-744-1455) is located at 260 Bellevue Avenue, Upper Montclair, NJ. The Bergenfield Cinema (201-385-1600) is located at 58 South Washington Avenue, Bergenfield, NJ. Both theaters are not far from New York City.
Editor's note: Regularly scheduled open captioned movies are also shown at the Walter Reade Theater at Lincoln Center, 165 West 65th Street between Broadway and Amsterdam Avenues. For information, call 212-875-5600, or access. www.filmlinc.com
EDITORIAL: Somebody Should - Somebody Did - Everybody Can
"Somebody should do something about captioning movies." "Somebody should ask restaurants to have written lists of specials." "Somebody should make sure doctors, nurses and administrators use assistive devices so patients who are hard of hearing and deaf can understand what is being said." How often have you, someone you know who has a hearing loss, a relative or friend said, "Somebody should?" Everyone who has a hearing loss has a list a mile long of "Somebody shoulds." At a.b.c.'s Cultural Affairs Workshop, Arlene Romoff, the editor of this newsletter said, "Everybody is Somebody." I tucked the phrase away in the back of my head because it struck me as a wonderful way to think about advocacy. Being an advocate when you are hard of hearing or deaf can be a difficult experience. It's hard to talk to people when you are never sure you are going to be able to understand their questions or answers. Most of the time we don't know if what we say and do makes a difference in people's lives. Then, suddenly, we discover that we have made an impact. I remembered this when I met a woman who said she heard me speak about using assistive listening and alerting devices when you travel. She has been profoundly hard of hearing all her life. On a trip to Hawaii, she used an FM unit for the first time and was thrilled to discover that she could hear the guides. "At the beginning of the trip it was really hard for me to ask each guide to use the FM mike. As the trip progressed and I realized that I could hear what was being said, it became easier and easier. Using the FM made an enormous difference. I relaxed and enjoyed the scenery and the verbal explanations, something I was never able to do before. What a treat!"
The work of the "somebodies" who are a.b.c. members has produced large and small triumphs that touch all our lives. These include, captioning on TV, at the movies and at Broadway shows, access to Lincoln Center museums in New York City, TTY's at rest stops on the New Jersey Turnpike, and health care and travel access.
Sometimes, when I am feeling tired at the end of a long frustrating week, I ask myself , "Why am I doing this?" It would be easy to retreat into my world of silence and forget the endless daily explanations of what I need to be able to communicate. Then someone says "Thank you. You really made a difference in my life," and I remember that "everybody is somebody." Each time "somebody" speaks up and explains their needs or does something to make their own lives easier, they help other people who have a hearing loss.
Be a "somebody." You will be surprised how easy it is and how much you enjoy it!
Ruth D. Shapiro, M.A.
Coordinator, a.b.c.
IDEA Advocacy for Children Who Are Deaf or Hard of Hearing:
A Question and Answer Book for Parents and Professionals.
Bonnie P. Tucker, Singular Publishing Group, 1997, 126 p. $14.95
Deaf attorney Bonnie Poitras Tucker's Preface, in her latest book, is explicit in stating its intended audience: "This book is written for ALL parents of children with hearing losses… in recognition of the ultimate right and responsibility of parents to make important choices . . . [and] for professionals who assist parents in obtaining appropriate educational settings and services for their deaf and hard-of-hearing children." IDEA - the Individuals with Disabilities Act (1975, public law 94-142) - had three primary purposes: "to assure that all children with disabilities receive a free, appropriate, public education that emphasizes special education and related services designed to meet their unique needs; second, to protect the rights of children with disabilities... third, to assist the states in providing for the effective education for all children with disabilities." The discussion Tucker conducts in her question/answer format considers the terminology of the original law, the more recent updates, the legal battles that have ensued in confrontations between educators and parents: "The least restrictive environment concept is the heart of much controversy where deaf and hard-of-hearing are at issue." Tucker, raised in the oral tradition negating sign language, emphasizes that this book addresses the varied methods of education open to children with hearing loss: "segregated education, integrated . . . auditory or oral . . cued speech . . sign language." IDEA Advocacy for . . . discusses every aspect of negotiations parents may face, including legal proceedings, in pursuing their personal goals toward their child's education. A child's right to an "appropriate" education - and the differing views of what an "appropriate" education means, exist in a vast limbo of semantic interpretation. Tucker includes a listing of organizations offering legal assistance - but more than any single issue, this professor of law in Arizona offers answers to 150 questions asked by parents - in their "lonely struggle to obtain educational services," and to professionals in the educational system cast asea in legal terminology. Are we out of the dark ages of most of the 20th century's attitudes toward educating children with specific and special auditory needs? Maybe . . . if we have a copy of Tucker's book within reach on our desk.
Reviewed by: Hannah Merker
© Copyright 1998 Hannah Merker
COCHLEAR IMPLANT INFORMATION RESOURCES
1- Cochlear Implant Club International, Inc.
5335 Wisconsin Ave. NW, Suite 440
Washington, DC 20015-2034
202-895-2781 Phone 202-895-2782 (FAX)
www.cici.org Website
pwms@cici.worldnet.att.net EMail
CICI is a nonprofit organization dedicated to educating and supporting cochlear implant recipients and their families; advocating and promoting cochlear implants. Membership fees include subscription to their quarterly magazine, CONTACT.
2 - CI FORUM
The CI Forum is a free email Internet bulletin board support group. Only information related to Cochlear Implants is discussed on this forum. To subscribe, send an email to the following address: LISTSERV@YORKU.CA
In the body of the email, type: SUBSCRIBE CI your name. You will receive further information by email on how to send and receive messages to this bulletin board.
3 - League for the Hard of Hearing CI Support Group
This support group meets once a month at the League for the Hard of Hearing, from 5:30 to 7:00 p.m. Pat Rothschild, Director of Communication, and Dr. Laurie Hanin, Director of Audiology, are the moderators. To receive meeting notices, call 212-741-7698, fax, email or write to the League and ask to be put on the CI Support Group mailing list.
TRAVELIN' EARS by Ruth Shapiro
Scotland, the land of heather, plaids and kilts was my destination last summer. Before I signed up for the two-week walking tour which went to the Highlands, starting and ending in Edinburgh, I called the owner of the tour company, explained about my severe hearing loss and need for assistive devices and then I followed up with a letter. It turned out that I didn't ask enough of the right questions. More about that later.
The trip began with a three hour delay at Newark and another three hour delay in London for the connecting flight to Edinburgh. Happily, I was able to hear the face to face explanation for the delays from the airline staff with my digital hearing aids. It was also reassuring to know that my assistive devices were handy, stowed in my backpack, in case I needed them. On the Continental flight to London, there was a chart on the screen that showed how far we had traveled and the time and distance to our destination. I didn't worry about understanding the pilot's announcements. It was 6 p.m. when I finally arrived at the hotel in Edinburgh, too tired and grumpy for a meal in a noisy restaurant. What I needed was a walk to get the kinks out of my body and some fresh air in my lungs. A quick trip to a supermarket would solve my food problem! It took ten minutes to buy fruit, cheese and crackers, packaged soup and my favorite indulgence, chocolate rolls for dessert. Using the money I had changed at the airport, I paid my bill at the checkout counter and walked back to the hotel feeling much better.
I had an early breakfast in the hotel dining room, brought my suitcase and backpack downstairs, and joined the group at our first meeting. We were twelve people plus Kathy, the tour leader, whom I had met the night before, and Digby, our guide - a tall, slim Scotsman who arrived dressed appropriately in a kilt. Kathy knew about my FM mike, used it and then passed it on to Digby. I was able to hear the plan for the first day. We were driving to Pitlochry, a town north of Edinburgh, with a stop along the way at a glass factory and a visit to Athol, our first castle. The group and the luggage were loaded into two vans. I sat in the middle seat in Digby's fourteen-passenger van. When we reached the highway, I realized that I had an unexpected problem. Road noise made it impossible for me to understand the conversations and rounds of laughter around me. I felt lonely and frustrated. The FM system didn't work in the van because of electrical interference. I watched the passing scenery - hills covered in heather, sheep grazing in the fields, blue sky and big, puffy white clouds - and I decided to sit in the front seat of the van as often as I could so I wouldn't feel so isolated in the crowd. On my next trip I'll find out from my audiologist if there are any assistive devices that work on a bus.
Kathy and I shared a two-bedroom apartment with a kitchen in Pitlochry. The rest of the group stayed in a bed and breakfast up the road. Throughout the trip Kathy had a room next to mine to make sure that, in case of an emergency, she could come and get me because I could not hear the fire alarm. In the morning the group met to hear about the day's activities and to listen to a reading of the trip diary which was written by a different person every day. I was the first reader. It wasn't until the following morning that I realized I had another problem. I couldn't hear the person who was reading so I asked to see the diary. I probably could have used my FM but that meant carrying it all day, something I really didn't want to do because it added more weight to my already full back pack. I did know what the plans for each day were because I made sure to sit near Digby and Kathy.
Before I signed up for the trip I asked the owner of the tour company about the terrain we would be walking and I was assured that I wouldn't have a problem. Although I had trained for the trip by walking four miles with a loaded back pack and climbing ten flights of stairs every day for three months, I had trouble keeping up the pace that Digby, a professional climber, set. I participated in the walks when I was sure that I could manage them and took the "low road" several times rather than take a chance of hurting myself. The last two days of the trip in Edinburgh I spent my time museum-hopping and browsing through the streets with my camera, which was a real treat.
I came home from Scotland with lots of beautiful photographs and some important lessons. No matter how many questions I ask and how prepared I am, every trip presents new challenges and is a learning experience for me and the groups I travel with. Now, where did I put that guide to Greece?
Lincoln Center Theater at the Vivian Beaumont presented its first open captioned performance, "Ah, Wilderness," by Eugene O-Neill, on April 23rd. The open captioning, which was arranged by the Theatre Development Fund's (TDF) Theatre Access Project (TAP), was performed by Don DePew, who has provided open captioning at many Broadway productions and New Jersey regional theaters.
The Vivian Beaumont theater lent a new dimension to captioned live performances because the theater is in the three-quarter round with a thrust stage. The stage and the captions were easily seen from the seats in the section reserved for captioned viewing. The performance was very well attended, and it was the first time for many people with a hearing loss to be able to attend a performance at this theater. The theater is also equipped with an infrared system.
Lincoln Center Theater, in conjunction with TAP, plans to offer an open-captioned performance of "Twelfth Night" on August 19th at the Vivian Beaumont theater. TAP, under the direction of Lisa Carling, seeks to make theatre accessible, enjoyable and affordable for people with disabilities. For more information about open captioned performances, and other accessible programming, contact...
TAP/TDF tap@tdf.org, www.tdf.org
1501 Broadway, Suite 2110
New York, NY 10036
212-221-1103(Voice) 212-719-4537 (TTY)
HandsOn HandsOnNYC@aol.com
131 Varick Street Room 909
New York, NY 10013-1210
212-627-4898(Voice) 212-627-1070 (TTY)
(Also has information about captioned live theater programming)
MONA LISA'S SMILE - A CLUE TO SPEECHREADING
by Toby Kurzband, Ed. D.
The famous painting by Leonardo da Vinci has intrigued generations because of its "enigmatic" smile. People who have studied the painting are not sure whether she is really smiling or what feelings the artist wished to portray. The question is important in "speechreading" because the interpretation of facial expressions is what makes speechreading an advance over lipreading. In addition to learning lipreading, the person with a hearing loss is instructed to observe the eyes, the eyebrows, the forehead, the jaw and even the nose and the chin - as well as the lips. Psychologists who have begun to study the wide variety of facial expressions have observed over 130 different expressions. For example, they have identified 17 different smiles, beginning with the "polite smile" which can be produced by the voluntary muscles of the face, to the hilarious laugh which is produced by the involuntary muscles and results in the "laugh wrinkles" around the eyes. The major expressions, joy and sadness, were portrayed in masks in the comedies and tragedies of ancient Greece. The painted face on the clown may hide a personal tragedy as portrayed in the opera "Pagiliacci." In the story, "Dr. Jekyll and Mr. Hyde," illustrations of the changes in the face of the same person are essential to the plot.
Beyond these two major facial expressions, there is a "vocabulary" of expressions which indicate fear, disdain, contempt, wonder, hauteur, surprise, doubt, stupidity, winking, crying, all of which are important for the story illustrator and the cartoonist. For the speechreader, it is important to recognize the expression on the face of the speaker who is waiting for an answer to his question. Some of us have experienced the embarrassment of continuing to smile when listening and being asked, "Why are you smiling when I told you that my dog just died?"
The wide variety of facial expressions is also evident in such phrases as "tight lips," "flaring nostrils," "fish-eyed," "dewy eyed," "poker face," "ecstatic," "hysterical," "if looks could kill," "come hither look" and similar phrases found in literature.
Artists have been particularly sensitive to depicting facial expressions. Examples can be found in the paintings of Leonardo da Vinci, Rembrandt, Hals, Hogarth, Daumier, Goya and even Picasso. More contemporary examples can be found in story illustrations in magazines and books and in political cartoons.
The emotions conveyed by facial expressions are a valuable clue in understanding the speechreading process. Seasoned speechreaders probably have some strong opinions as to just what Mona Lisa is smiling about!
COURTROOM ACCESS UPDATE by Dr. Paula Brown Glick
As a member of the executive committee of a.b.c., I am preparing a guide to help people with hearing loss to obtain effective communication in New York courts. We have in recent years prepared material on what people with hearing loss should do for hearing access in health care, travel, theatres and cultural institutions. I am personally very familiar with assistive listening systems of many kinds, and use them successfully in theatres, lectures, movies, TV and meetings.
In gathering background material, I have attended meetings and obtained pamphlets and books from the Department of Justice, American Bar Association and other official bodies. Clearly, the requirements and procedures that should be followed by court officials are well explained. However, the recommended equipment is not reviewed or tested by people with hearing loss, so that its effectiveness for hard of hearing citizens remains unknown, and problems can be severe.
I have examined the arrangements for captioning and amplifying communication in courts as now installed by the Court Reporters Association at 60 Centre Street and I think that it should solve many problems of access and participation by deaf and hard of hearing people. I have also seen (but not heard) a well-equipped federal courtroom with many infrared emitters and receivers at 500 Pearl Street.
I have in the past two months been called for jury duty in both the New York State Supreme Court (60 Centre Street) and the U.S. District Court (500 Pearl Street) in New York City, and attended the preliminary sessions for both of these. I informed both before the date of attendance that I would require an assistive listening system, and this was made available at the time of my appearance.
The audio-visual and court officers provided equipment that they believed would make it possible for me to participate as a juror. As far as I can tell, the receivers are of good quality, and perhaps the transmitters are also. However in both jury selection sites, I could not hear what was being said, and I was excused from jury duty. The problem appears to be in the installation in the U.S. District Court, and in the equipment in the State Supreme Court. After my disappointment at the State Supreme Court, I discussed the difficulties with court officials, and suggested ways for improving it. The problems in courtroom 18B at 500 Pearl Street would seem to be in the installation of the infrared system, as it was only faintly audible to me, and this surely could be improved by a capable sound engineer familiar with infrared systems.
At the beginning of jury selection, both State and Federal systems place all potential jurors in an assembly room and show a video that explains the jury system. Neither of these videos is captioned, as Title II of the ADA requires, and the rooms have no infrared emitters, so that the video and announcements cannot be understood by people with hearing loss.
My observations have so far been limited, and I can see that excuse from jury duty is easy to obtain if people are not able to hear the proceedings, even though they wish to participate. But what happens to people who must take part in a court case? I assume that some provision is made for people who require a sign language interpreter.
However, the vast majority of people with hearing loss are not sign language users - they depend upon effective assistive listening systems and/or captioning. These services are not difficult to set up and are effective in many other New York area sites not connected to the courts.
CULTURAL AFFAIRS COMMITTEE HOLDS CONSUMER WORKSHOP
In its ongoing commitment to educate the consumer about services and equipment for people with hearing loss, a.b.c.'s Cultural Affairs Committee ran a 2-hour workshop last March entitled, "A Workshop for People with Hearing Loss: Understanding and Enjoying Movies, Theater, Concerts and Other Cultural Events."
Members of the Cultural Affairs Committee spoke about access in a variety of cultural settings. Keith Muller, Executive Director of the League for the Hard of Hearing, gave the introductory remarks and Ruth Shapiro, Coordinator of a.b.c., introduced the members of the committee. Dr. Paula Brown Glick, co-chair of the Cultural Affairs Committee gave a general overview of services available. Arlene Romoff, also co-chair of the committee, highlighted the accessibility services at museums and the movies. Florence Steiger covered theater access; Joe Gordon gave a rundown on captioning services; Toby Kurzband gave his perspective on appreciating the arts with a hearing loss; and Josh Gendel, Technical Advisor at the League, gave a demonstration of assistive devices.
The workshop was very well attended, and there was a lively question-and-answer period. Each attendee received a comprehensive manual entitled, "A Guide to Accessibility at Cultural Institutions for People Who are Hard of Hearing and Deaf." This manual, newly updated, contains complete information on assistive devices and services, as well as actual theater (both movie and live) and museum locations where assistive devices and/or captioning are available. For information on how to order this manual, see the a.b.c. Order Form inserted in this newsletter.
CHCA at the League for the Hard of Hearing by Lise Hamlin
In 1995, the New York State Legislature, under the leadership of Assembly members Steven Sanders, Dick Gottfried and Debra Glick, held hearings across the state regarding access to health care for people who are deaf, deaf-blind, and hard of hearing. People who are hard of hearing reported incidents of hospital personnel ignoring them, talking around them to family members instead of finding a way to communicate directly with the patients. People who are deaf spoke of their frustration that sign language interpreters were not readily available, or in some cases, never provided. One story surfaced about a young woman who was asked to interpret for her family. What did the doctor wish to relay to her family? He wanted her to tell her family that her brother had cancer. That young woman was understandably upset; she should never have been put in that position.
The Legislature did not simply listen to these horror stories - they acted. The New York State Legislature appropriated money to be used to educate providers and consumers alike to gain greater communication access. After a competitive bidding process, the League for the Hard of Hearing was awarded the grant. In 1995, the Center for Health Care Access (CHCA) was born.
CHCA at the League for the Hard of Hearing continues to ensure that health and mental health care facilities and services are accessible to people who are deaf, deaf-blind, and hard of hearing. CHCA advises consumers about reasonable accommodations and assistive devices they can expect health care facilities to provide. CHCA also provides information and referrals to hospital administrators and staff members so they may be adequately equipped to meet the individual communication needs of each patient. CHCA works with a.b.c.'s Health Care Committee in providing these services. And CHCA's training materials include a.b.c.'s health care kits for both consumers and providers.
CHCA has reached out to both providers of medical services and to consumers by: providing training sessions to medical personnel at New York Geriatric Education Center and Bellevue Hospital; providing educational sessions for parents of children with hearing loss at the League for the Hard of Hearing; joining other organizations representing people with disabilities at the Legislative Disability Awareness Day in Albany in 1997 and 1998; providing training sessions to Staten Island University Hospital (SIUH) substance abuse counselors and serving on the Advisory Committee for People who are Deaf and Hard of Hearing at Staten Island University Hospital (SIUH); joining the New York City Coalition of Independent Living Centers (ILC) for a presentation on health care access to consumers who are deaf and hard of hearing at the ILC Conference; presenting a workshop with Dr. Donna Wayner of the Hearing Center at the Albany Medical Center Hospital for the NYS Rehabilitation Research and Training Center in Albany, and for the New York State Speech Language Hearing Association Conference.
CHCA staff has been updating the training kits for both health care providers and for consumers to include such items as a list of ototoxic medications. CHCA plans for the future include bringing cutting edge technology such as remote interpreting to hard of hearing and deaf patients.
CHCA's work advocating for communication access to health care for people who are hard of hearing, deaf at 917-3057809 or CHCA@lhh.org - - or visit the CHCA website.