Summer 2000 | Volume 9 Number 2
A publication of advocates for better communication
a volunteer program allied with the League for the Hard of Hearing
Editor-in-Chief: Arlene Romoff
a.b.c. Executive Board:
Co-Coordinators
Florence Steiger & Charlotte N. Roth
Cultural Affairs Committee
Arlene Romoff & Paula Brown Glick, Ph.D., Co-Chairs
Health Care Committee
Ruth R. Green & Dr. Orin Kaufman, Co-Chairs
Restaurant Committee
Ruth Bernstein, Chair
Senior Centers
Ruth R. Green, Chair
Telecommunications Committee
Joseph Gordon, Chair
Travel Committee
Ruth Bernstein, Chair
League Representatives:
Keith Muller, Executive Director
Lise Hamlin, Access & Advocacy Coordinator
Josh Gendel, Technical Services Director
Amy Hohn, Director of Volunteers
Justin R. Cristaldi, Web Designer
a.b.c. Reports is a publication of advocates for better communication,a volunteer program allied with:
League for the Hard of Hearing
71 West 23rd Street
New York, NY 10010-4162
917-305-7700 (voice) / 305-7999 (TTY) 917-305-7888 (FAX)
INSIDE THIS ISSUE
Services for Hearing Loss Run a Poor Second to Mobility Aid
FCC Mandates 711 RELAY Services
Editorial: It All Counts!
Book Review: HEAR AGAIN
Police Workshop Given
Active Advocate from Canada
Hearing Accessible London Trip
Travel Committee Report
Letter to the Editor
Health Care Access
New a.b.c. Pamphlets
RERC Forum Held
Captioned TV Advice
Advocacy Workshop Given at SHHH Convention
Museum Accessibility Checklist Survey
Health Care Workshops Scheduled
STAGETEXT Oganization Formed to Promote Captioning in UK
SERVICES FOR HEARING LOSS RUN
A POOR SECOND TO MOBILITY AID
By Rosemarie Kasper
For many years I considered my loss of hearing to be a secondary disorder. Born with osteogenesis imperfecta (OI), a fragile bone condition, I have used a wheelchair throughout my life. The hearing loss, which is associated with OI, started when I was about ten, and I began wearing a hearing aid at age 18. Little did I imagine then the incredible impact that hearing loss would have on my life through the years.
The real turning point was in 1986, when I suddenly lost total hearing in my right ear. I had been wearing binaural aids, and being forced into the world of monaural hearing was shattering. During the months and years that followed, I realized ever more clearly that my hearing impairment does in fact have a primary impact on my life in a multitude of ways.
It also became increasingly apparent that a visible condition, such as using a wheelchair, has distinct advantages over an invisible disorder such as hearing loss - especially in the matter of services.
The State of New Jersey, for example, had allocated $440,000 for the Division of the Deaf and Hard of Hearing (DDHH), with no increase in funding FOR A DECADE! The DDHH has just one office serving the entire state, there is NO Assistive Devices Demonstration Center, and NO Hard of Hearing Specialist to serve as resource/consultant.
(Editor's Note: Thanks to effective advocacy, increased funding has just been allocated to the DDHH for FY2000.)
With a wheelchair, most people immediately know what type of help is needed and what situations should be avoided. With a hearing loss, they either have no expectations or negative expectations. They typically dismiss the disorder as being just a nuisance, effectively precluding the person from the conversation, or shout, exacerbating the problem.
The wheelchair rarely prevents my being active in groups or enjoying the theater. When my hearing loss was less severe, I participated in many organizations and was privileged to serve as the president of several. At present I am unable to serve effectively on boards or committees unless realtime captioning (CART) is provided or someone takes notes for me, and socially, am restricted to interacting with no more than two persons at one time in order to comprehend what is being said. I had not been to the theater for at least a half dozen years until captioned movies and captioned live theater were introduced recently in two nearby theaters.
Although I had read about assistive listening devices (ALDs), I could find no local dealer. Finally, in 1987, I learned that ALDs would be exhibited at a hearing fair in Westchester, New York. I attended and felt like Alice in Wonderland surrounded by these magical devices. I purchased an FM device as well as a bicros component for my hearing aid.
Through the years I purchased eight to ten increasingly powerful hearing aids, in addition to a wide variety of other ALDs including an infrared system, hand-held microphone, TTY, visual alerts for smoke alarm, telephone, doorbell, and alarm clock, closed captioned TV, and others. Many were quite costly. All of my wheelchairs and related mobility equipment have been covered by insurance. NONE of my hearing equipment was covered.
Through contacts with other persons with serious hearing loss, I recognize that my problems are not unique. Both wheelchairs and hearing aids can help people with disabilities to remain productive citizens in the mainstream of life. Yet programs for the mobility impaired generally receive ample funding while services for people with hearing loss too often are virtually ignored. WHY??? The absence of a hearing aid would render me almost as helpless as the absence of a wheelchair, just in a different manner.
I had never encountered problems on the job due to my wheelchair, either clerical, teaching, or later, as a rehabilitation counselor. However, I felt compelled to take early retirement due to my progressive hearing loss. Assistive listening devices had become much less helpful to me and counseling requires excellent communication skills both in person and on the phone.
People with hearing loss need resources, such as Assistive Devices Demonstration Centers and Hard of Hearing Specialists, in order to learn in a more timely manner about state-of-the-art devices and services. These resources are minimally available at present and as a result, those of us who are affected by hearing loss often are prevented from functioning at our maximum potential. In my own case, I would have been able to function more effectively both on and off the job for a longer period of time, had I known about needed assistive devices sooner.
Throughout history, people with hearing loss have been stigmatized and treated as second-class citizens. As a new Millennium starts, I hope that we will see a solid investment in more and better services for people with hearing loss, a very under-served population.
Rosemarie Kasper, a retired vocational rehabilitation counselor, has published many articles on disability issues. The focus of her advocacy efforts in recent years has shifted from wheelchair to communication access.
FCC MANDATES NATIONWIDE IMPLEMENTATION OF 711 FOR TELECOMMUNICATIONS RELAY SERVICES
Washington, D.C. - On July 21, 2000, the FCC required all telecommunications carriers nationwide to implement three-digit, 711, dialing for access to all Telecommunications Relay Services (TRS). This new dialing arrangement will supplement existing systems in most states that require 7 to 10 digit numbers in order to initiate relay calls. TRS allows people who use TTY telephones to communicate with those who use regular voice phones, via a Relay operator.
The FCC noted that its new rule will eliminate the difficulties that individuals have with finding or remembering various relay numbers as they travel from state to state. Both voice and TRS users will be able to initiate a call from any telephone, anywhere in the United States, without having to remember and dial a 7 or 10-digit number. As a result, it will improve access to TRS, and encourage and facilitate communication among individuals with hearing or speech disabilities and voice users.
In order to ensure the efficient, effective, and successful use of 711 access to TRS, the FCC required carriers and relay providers, in cooperation with the states, to engage in on-going and comprehensive education and outreach programs to publicize the availability of 711 access in a manner reasonably designed to reach the largest number of consumers possible.
New Jersey and New York have already implemented 711 service. The FCC ruling has set a one year timeframe for implementation. Copies of the entire press release from the FCC is available at their website: www.fcc.gov/cib/dro
Note: 711 is not an emergency code! For emergencies, continue to use 911.
EDITORIAL: IT ALL COUNTS!
We have been busy! Our advocacy efforts continue to branch out to other geographic areas. The "hearing accessible" London trip planted the seeds of captioned live theatre there, and those seeds continue to grow! Our advocacy counterparts in London are almost at their goal of replicating the captioned live theatre experiences they sampled during that magical week!
Advocacy also means education, and we are proud to report on the workshop that was given to the New York City Police Department. We all know that hearing loss is the most misunderstood of disabilities, so this was clearly an area where "somebody should" educate the police about hearing loss. We are proud that "somebody did" respond to that great need!
Also in the issue, in a "Letter to the Editor," is a report from an advocate who followed up on the captioned audioguides mentioned in the last issue of a.b.c. Reports. It is so helpful to get feedback like this - to know if assistive equipment is available, maintained, and if it works as expected. If you have any information about accessibility that you think would be beneficial to others, please write to this newsletter so we can share it.
Also in this issue, an advocate from Canada reports on her trip to New York City, making sure that her access needs were arranged ahead of time. Her positive experiences emphasize the point that we are not only advocating for our own needs, but for all others who follow in our footsteps.
Advocacy also means educating consumers - and a.b.c. was privileged to give a workshop on effective advocacy at the SHHH National Convention last June. How exciting - we look forward to being cloned!
Thank you to Lori Heir for capturing the essence of my book, HEAR AGAIN, in her review, contained in this issue. And a special thank you to Rosemarie Kasper, for her personal insights and perspectives on hearing and wheelchair access.
And to all the other advocates out there, keep up the good work! It all counts!
Arlene Romoff
Editor, a.b.c. Reports
COCHLEAR IMPLANT CORNER: BOOK REVIEW:HEAR AGAIN - Back to Life with a Cochlear Implan
League for the Hard of Hearing Publications, 1999 ISBN 0967784301
(Reprinted, with permission, from the NJ Monthly Communicator) Reviewed by Lori Heir
During a book signing party at the League for the Hard of Hearing in New York City last March, first-time author, Arlene Romoff, announced the debut of her new book, HEAR AGAIN - Back to Life with a Cochlear Implant. Arlene's journal began as an e-mail exchange between her family and friends. She only intended to describe the first few days after her cochlear implant (CI) hookup and initial mapping. However, she received such an overwhelming response to her letters that she was compelled to continue writing. The result is an emotional and highly perceptive year-long account of her journey back toward hearing again. Arlene describes her experiences as nothing short of miraculous.
Throughout HEAR AGAIN, Arlene vividly captures the nuances of "non-events," the trivial details of everyday life that hearing people think nothing of, but are "embarrassing, frustrating, and monumental" for those with hearing loss. Arlene's impressions of the mundane-made-momentous range from supermarket excursions to root canals. As she rediscovers the hearing world, even the most trifling encounters with her surroundings soar to paramount levels of importance. With her new eager-to-hear bionic ear, sounds normally taken for granted suddenly seem surreally poignant.
Arlene recalls a "key non-event" when she describes the day she picked up her car keys and could no longer hear them jangle. People experiencing hearing loss will immediately relate to the pangs of such a seemingly trite moment, which is in reality a heart-wrenching juncture along the downhill road toward deafness. Happily, Arlene's CI reversed this descending spiral and she can hear the clank of her keys again. After a glimpse at the losses she endured, it is a thrill to cheer for her triumphs. She "wakes-up" Rip Van Winkle style to the female voices of newscasters (when she last heard the news, women were not on the radio), the electronic beeps of supermarket checkout scanners, and the computerized voices of talking elevators. The world has changed drastically since Arlene began losing her hearing, and it is a joy to celebrate her reawakening to sound along with her.
But the book is not one celebration after the next. HEAR AGAIN derives its power from Arlene's candid, matter-of-fact writing style. Readers can trust Arlene to tell it how it is, for better or worse. She does not hold back when she compares a Glen Miller tape to "an ensemble of kazoo-playing mosquitoes." Nor does she spare her readers an account of the CI's annoyances, removing it when swimming for instance, or the trouble of placing the sound processor discreetly under her clothing for aesthetic reasons. And she clearly compares "Gold" hearing to "Silver" hearing, making a point to note that background noise still presents a challenge and certain environments allow for easier listening. Her CI is a miracle, but she is justly cautious to keep her enthusiasm in check.
Arlene is the first to admit that hearing with a CI is not tantamount to hearing "normally." But toward the end of HEAR AGAIN, the improvements she relates are most impressive. She is able to hear on the telephone, listen to books on tape, enjoy most music, and she even says, "I'm starting to forget what it was like not to hear." For someone who decided to have a cochlear implant with extremely low expectations (she only hoped to hear consonants in conversational speech to enhance lipreading), Arlene received so much more sound than she ever imagined possible. It is understandable why she has trouble dwelling on the CI's glitches and prefers to see the glass half full. In a book overflowing with sharply insightful parallels, Arlene draws one of her best analogies. "Do you suppose the Israelites complained about mud in their sandals when they crossed the Red Sea?" she asks. Her answer, "Same principle. So miracle, yes--perfect, no."
After 30 years of progressive hearing loss culminating in profound deafness, with the chance to hear again, Arlene says, "I find myself wishing I could share this precious gift of hearing…[with people] who take their normal hearing for granted. They'll never understand the special joy and wonder that I experience each and every day of being able to hear again." Arlene may have to recant her words. She paints such a comprehensive picture of her experience, she fulfills her own wish. People with normal hearing will gain an appreciation for what it is like to lose, long for, and regain hearing. Those with hearing loss will have their own feelings validated, and people considering a cochlear implant will find hope - notwithstanding realistic expectations. A cochlear implant is not a viable solution for everyone, and it is not a cure for deafness. However, HEAR AGAIN is a celebration of Arlene's own personal miracle, and it is a pleasure to accept the invitation she extends to rejoice with her.
Most of all, HEAR AGAIN places life in perspective. Arlene correctly observes that the world is full of small miracles, and it is unfortunate that people do not always realize the gifts they have until they lose them. In this regard, HEAR AGAIN is a wake-up call. It is an awakening to one woman's miracle, but it is also an awakening to the struggles of many. It is a reflection on the shared experiences of people with hearing loss, and a sensitive window into their silent world. With keen perception, Arlene Romoff describes her 30-year visit to this silent world and what it is like to "hear again." Reading her book is an enlightening experience that elicits a full spectrum of emotional responses, from tears to laughter. It definitely stirs readers to contemplate life's blessings and challenges.
Orders are now being taken for HEAR AGAIN. Send check or money order for $15.95 (postage paid) to: League for the Hard of Hearing, 71 West 23rd Street, New York, NY 10010-4162. For additional information and credit card orders, contact the League at 917-305-7809 or access the website at: www.lhh.org/catalog/hearagain.htm
Note: Lori Heir, a Phi Beta Kappa graduate of Drew University, is the assistant editor for the ALDA News (Association of Late Deafened Adults). She lost most of her hearing to Lyme disease.
WORKSHOP GIVEN TO NYC POLICE DEPARTMENT
By Ed McGibbon
I am pleased to report on the workshop a.b.c. gave to the New York Police Department on May 31, 2000. The workshop took place at the New York Police Academy in Manhattan. We were delighted to have 85 men and women, from various precincts within the five boroughs attend. I couldn't have done this alone, and I am so grateful for the help that I received in this presentation. I gave a basic introduction, an overview of the material to be covered in the workshop.
Lise Hamlin, whom I cannot thank enough, gave a wonderful basic lesson about hearing loss and how to deal with hearing loss. She spoke briefly about the ADA, civilian rights, and particularly about what could happen when a hard of hearing person is brought to the precinct, and how they should be accommodated. Lise covered all the important points that they needed to know, even communication. Her lecture was certainly an eye-opener!
Joan Lynton gave a wonderful lecture about Deaf Culture. She explored her own experiences and provided information on how Deaf people communicate. She also gave some tips to the Officers, such as: never have family members serve as interpreters; always arrange for professional sign language interpreters. She also explained TTY telephones and how to operate them. She showed a few words in sign language as well. Her presentation involved questions and answers from the audience.
Lois Beadle gave a great overview of her cochlear implant. She explained the technology of the device and how it works. After the workshop was over, a few were curious and wanted to inspect her processor themselves. Some of their questions were real eye-openers, and we found ourselves learning a lot about our audience.
Overall, the workshop was a success, as we did not have any sleepers in the crowd! I am pleased the topic of "Awareness about Hearing Loss" was beneficial to them, and that they would like to look into having this as an ongoing educational program. The police officer who was in charge of this workshop was amazed to learn so much about the hidden issue of people with hearing loss. He would recommend having a workshop for the new cadets that are entering this fall. He asked me if I would be interested in doing this again. I will try to see if I can get some funding as a contribution to the League, a.b.c. and for SHHH for this service.
Many thanks to Lise Hamlin, Joan Lynton, Lois Beadle for their presentations - and thanks, too, to the League for their support.
ACTIVE ADVOCATE:From Canada to the Big Apple
My husband and I had the pleasure to visit New York City for a week in April. What an interesting and lively city!
My better half is a hearing person and so was I. However, I now have a progressive bilateral severe sensorineural loss. So, it makes for a life full of challenges. I taught French as a second language for more than 25 years and after following training in Calgary, Alberta I was certified as a speechreading instructor. I have had classes since 1993, which are normally held in the fall.
I am French-speaking, born and brought up in Verdun, Quebec (on the island of Montreal). We made our home in Saint John, New Brunswick 40 years ago. We are now both retired and traveling as much as possible.
I am a SHHH member, a CHHA (Canadian Hard of Hearing) member and also a member of a Quebec Association. As a CHHA member, I was instrumental along with others in forming a CHHA Chapter for our province. I served as VP on that Board and I also served on the Saint John Deaf and Hard of Hearing Services Board. During that time our local theatre, "The Imperial," was being renovated and our CHHA chapter played a key role in making sure that access for hard of hearing people would be looked into. An infrared system was installed and is one of many great features of our theatre.
What have we accomplished? It looks little, compared to the U.S. We do not have as strong legislation and since I don't have a mandate to speak for the associations I belong to, I can only mention what I have accomplished. I am a strong advocate in this field. I have chosen to educate others around me as I go through life. Doctors, dentists, nurses, hospital staff, store clerks and cashiers, etc. It becomes an integral part of my daily encounters when it is necessary, of course. I am presently working on a special "cause" - access in a chapel. This is not achieved as yet. Access at religious services is not always possible unless one has only a mild loss since only headphones that can't be used with hearing aids are supplied. So, I have managed to convince a group of people and after six years, I think I see the light at the end of the tunnel. If each person with a hearing loss could spend a little time educating others around him/her we would accomplish so much more.
Getting back to New York. It was a super trip. Coming from the Maritimes, we flew to Montreal and then on to New York. We were well prepared as we tried to purchase our tickets and passes for the museums before our departure. It helped a great deal.
Thanks to many SHHH members, I was aware of the availability of technical devices. The problem I encountered was when asking the travel agency to reserve tickets, it was not possible to specify exactly what was needed. Also, reserving from another country was difficult. We even placed a call to the Metropolitan Opera and were told that only headsets were available. So, I understand our travel agency's problems. We either were misunderstood about what I really required or we were too late to reserve equipment. Fortunately, I had borrowed two infrared receivers…..SO THE SOUND WAS SUPER FOR THE ENJOYMENT OF RIGOLETTO AND AMADEUS.
Our room at the Millennium Broadway Hotel was also hearing accessible: TV captioning (we had no time to watch TV of course), phone with volume control and most important of all, a visual smoke alarm. Worth noting, however, at the hotel, when asked if a TYY could be available in an emergency, the concierge realized that they should own one. Had I traveled alone, my portable TTY would have been along.
On a whole, it was a very successful trip crowned with a nice walk in Central Park admiring a magnolia tree in bloom, the tulips and the squirrels. Also, lest I forget, the vendors selling fruit and flowers on street corners, the Soho district and its art galleries, Fifth Avenue, and so on . . .
New York SHHH members, a.b.c. volunteers: Congratulations for having achieved so much in your city! Thank you all for your help. It made our trip so much more pleasant. Hope to return some day.
Monique Gill
St. John, New Brunswick
HEARING ACCESSIBLE LONDON TOUR BECOMES A REALITY!
By Arlene Romoff
We're back from our hearing accessible London trip, and it was a wonderful week! This trip was organized by the Theatre Development Fund, a.b.c. and the League for the Hard of Hearing. The "hearing accessible" parts included using an FM system for tours, two open captioned performances, and using the infrared systems in the theatres, as available. Those with hearing aids with T-coils used loops, those with cochlear implants used patch cords, and those without T-coils used headphones - to interface with the FM and infrared systems.
We used the FM system for guided tours at the Globe Theatre, the Courtauld Gallery (art), the walking tour of the London Theatre district, and the "talk" given by the London theatre correspondent for "Variety." The FM system was also used in our bus by the tour guide. The Globe tour, and the theatre district tours were given by British actors. One of the highlights was when the tour guide took on the guise of Henry Higgins lamenting "why can't the English teach their children how to speak," in exactly the same spot in Covent Garden where "My Fair Lady" was filmed!
Prior to the open captioned performance of "Antony and Cleopatra" by the Royal Shakespeare Company (RSC), we attended a reception at the Barbican Centre. The BBC covered this event, and several of us were interviewed at the "interval" (intermission). We had a chance to meet the manager of the RSC, as well as several people from British organizations serving people with hearing loss. All were very enthusiastic about the captioning. The placement of the captioning screen was on the stage to the right, within view of the right side of the audience, which was seated in the "stalls" section (orchestra). There were about 100 people there for the captioned performance, the first ever for London theatre.
The following morning, we had a chance to meet with three British people with hearing loss, who were interested in getting captioned theatre performances on a regular basis - after we "Yanks" went home. We had a lively discussion and discovered that our experiences and hopes were virtually the same. What struck us most about attending the captioned performances was being able to laugh with the rest of the audience. We all knew how it hurt to be surrounded by people laughing, and knew how wonderful it felt when we could again become full members of the audience.
The second captioned performance was a comedy called "Comic Potential." It was about "actoids," bionic people used for television. The dialogue was fast, but it was hilarious - and as I looked around, everyone was laughing. Just what we wanted to do: laugh at the right time, just like everyone else. Our seats were in the balcony (the theatre wasn't large) and the captioning screen was set in the end of the horseshoe-shaped layout. It wasn't perfect, but it was a good start. We discussed the captioning with the theatre owners' representative, explaining why we needed captioning and not sign language interpreters. I used the infrared system in that theater, and it worked well. I since learned that there are CI users and hearing aid users who are not familiar with how to use infrared systems in the theatres. There is educating to do!
We had a follow-up interview, two days later, with the London correspondent for "Variety," Matt Wolf. We gave him our impressions of the two captioned performances we had seen, and also gave him an education on the needs of people with hearing loss. The article, based on our interview, appeared in the London and New York editions of "Variety" in June.
Aside from these specifically hearing accessible activities, we also went to the opera - "The Flying Dutchman" at the Royal Opera House - with superscripts above the stage. We also attended the ballet, "Manon", at the same theatre. The infrared system was not working, but the acoustics in that hall were excellent; I could hear the music, sitting in the second tier, without any difficulty.
Many of our group went to other shows on our own. I attended "Chicago" and "Fosse" - selecting those because of their visual and musical emphasis, rather than dialogue, since these were not captioned. The infrared systems in those theatres worked very well for me. I brought my own infrared receiver since I require the kind that a patch cord plugs into, and most theatres don't supply that type.
There was plenty to see and do in London, and transportation was so easy in that city. We all branched out visiting various museums, art galleries, antique markets, and shopping areas. We also went to the Millennium Dome, which was interesting, but not a big hit with this group. We had several dinners together - the best one being a Chinese restaurant which seated all 13 of us at a large round table with a lazy Susan in the center. Communication was much better this way, rather than a long oblong table. We also had a chance to dine together in a historic pub, as well as two other French restaurants.
I have been asked what the highlight of the trip was - and for me, the answer was easy. It was the captioned performance of the comedy "Comic Potential" - sitting there laughing with others - and afterwards, advocating with our British counterparts, explaining the diverse needs of people with hearing loss and why captioning is so important to so many people. It was a thrill to meet people I had only known from the Internet, and also to meet new friends, whose agenda and experiences so closely resembled our own.
If you are interested in going on a "hearing accessible tour," please contact the Theatre Development Fund/Theatre Access Project, 1501 Broadway, New York, NY 10036 or email to: tap@tdf.org
TDF/TAP will plan more hearing accessible tours if there is enough interest shown.
Many, many thanks to all those who worked so hard to make this "impossible dream" a reality! The trip was organized by the staff of the Theatre Deveolopment Fund Travel; Lisa Carling, Director of TDF's Theatre Access Project; Ruth Bernstein, a.b.c. Travel Chair; Josh Gendel, Director of the Assistive Devices Center at the League for the Hard of Hearing. We are grateful for the support and encouragement of Keith Muller, Executive Director, and Joe Brown, Director of Development of the League.
TRAVEL COMMITTEE REPORT
by Ruth Bernstein, Travel Chair
At the SHHH National Convention, I attended the workshop on Airline Travel chaired by Brenda Battat, SHHH Deputy Director. The panel included Walter Baer, Manager Customer Advocacy, Delta Airlines; Ronald B Pettit, Jr., Specialist, Customer Service Policies and Procedures, Northwest Airlines; and Kim Poppker, Senior Analyst, Airport Services, American Airlines.
Mr. Baer reported that Delta is reviewing training programs to include more information on the needs of people with hearing loss. They are installing digital screens at their desks throughout the nation's airports. These screens will have the capacity to give information about the airport, check-in time, changes in flight arrangements, show which seats are boarding, announce carry-on baggage guidelines, national weather map, weather information at the destination and what food will be served on board. Arrangements for hearing ear dogs accompanying passengers should be made in advance. In the USA, Delta requires documentation from the dog's training facility. International arrangements should be made well in advance of the trip.
Ron Pettit of Northwestern wears hearing aids. He advised travelers with hearing loss to identify yourself as hard of hearing/deaf when making travel arrangements. Ask for a SSR (special service request) and ask for written confirmation of the arrangements you asked for. That information will be passed on to the flight attendants when you board the airplane. Arrive early on the day of your trip and identify yourself to the staff at the gate. As someone with a disability, you can request pre-boarding. Stay close to the desk so staff can find you in case of a change in flight plans. Northwestern has a complaint resolution service. (They need it. It took me two days to get to St. Paul!).
Kim Poppker of American Airlines reinforced what Mr. Baer and Mr. Pettit had to say. She pointed out that assistive listening devices may interfere with the airplane's electrical system. It is a good idea to check in advance with the manufacturer of the device and the airlines if you are intending to use it when you fly.
Delta, Northwestern and American all will be installing equipment that allows for website reservations and check-in before leaving home. I hope that these systems will keep customers informed of changes in flight plans, and arrangements that need to be made to accommodate these changes.
I am hoping to become part of the coalition of professionals and consumers advising the airlines on advocacy issues for people with hearing loss.
To the Editor:
On Sunday, May 7th, I went on a Bliss Bus Tour to the Barnes Foundation Museum in Merion, PA. It was the most interesting museum I have ever seen. When I read in the last issue of a.b.c. Reports about this museum having the audioguides with scrolling text, I then made the reservation. I also sent a letter to the museum asking them about the audioguides with scrolling text. They never answered my letter. I had called Bliss Tours and they told me it would cost me seven dollars.
When I arrived, I requested it. It is a black box like an old transistor radio. It comes with a headphone. I told the guide that the headphone would not help me to hear. He told me to press a number and then the green button for instructions. At the gallery, each wall has about two or three numbers on the wall. When I tried the scrolling text, I found it hard to read. It was like a shadow over it. I didn't like it. The wall didn't have all the numbers of all the paintings. I asked and got a refund.
Each room has a basket at the end of the benches. Inside the basket was a chart of each wall in the room with diagrams of the placement of the paintings, along with the title, artist's name, and medium of each painting. I found this more helpful. Then I got tired of looking at the chart and looked at the paintings instead. They also have furniture, African sculptures and other collections. I like the way this museum arranged everything. It was very attractive to look at.
Ellen Werblow
Forest Hills, NY
Editor's Note: Thank you, Ellen, for reporting back to us about the audioguides with scrolling text! If anyone else has used these devices, or has had any other experiences that would help others, please let us know.
NEW a.b.c. PAMPHLETS NOW AVAILABLE
Several new and revised pamphlets and brochures are now available from a.b.c. Three, in particular, made their debut at the recent SHHH Convention in St. Paul, MN. "Providing Effective Communication: Requirements and the ADA," is by Paula Brown Glick, Ph.D, and Karin N. Mango, M.A., M.L.S. This booklet is designed to help businesses, government and public accommodations to comply with the ADA's requirements regarding assisting people who are deaf or hard of hearing. It explains the ADA and describes existing systems and devices available for public facilities.
" Be Prepared...and Equipped," by the same authors, is a reprint of their article in Hearing Health magazine (Jan/Feb 2000). It offers coping strategies to help people with hearing loss communicate and function effectively in all types of situations, make the best use of the many aids and services available, and provide for needs and contingencies.
In response to nationwide requests, a.b.c. has compiled "Guidelines for Developing an Effective Advocacy Program," a manual to help those wanting to establish advocacy groups for people with hearing loss in their own communities. An updated list of a.b.c. publications is included with this issue of the newsletter.
HEALTH CARE ACCESS: BE AN INFORMED CONSUMER
Through the efforts of the Health Care Committee of a.b.c., the Center for Health Care Access and the impact of the American with Disabilities Act, more health care facilities are becoming accessible to people with hearing loss. However, unless you, the consumer, assume the responsibility to notify your health care provider about your needs, nothing will happen. Remember, you must educate yourself as to what you need to make communication easier. Know your entitlements! It is your responsibility to transmit the information to your health care provider. If you need more information call the Health Care Committee of a.b.c. at 1-917-305-7890(V/TTY).
RERC FORUM ON HEARING ENHANCEMENT HELD
by Florence Steiger
Each year, the Rehabilitation Enhancement Research Center (RERC) on Technology Transfer explores transfer and commercialization opportunities for the assistive technology industry. In this case, "transfer and commercialization" refers to harnessing existing technology that would be beneficial to hearing enhancement, as well as to other industries, to make the use of the technology more affordable to the hearing impaired community. The principal organizations that participated on this project were the RERC on Technology Transfer at the University at Buffalo and the RERC on Hearing Enhancement at the Lexington Center. The Research Triangle Institute in North Carolina, Aztech Inc. in Buffalo, New York and the Independent Living Center of Western New York were also making important contributions to this project.
The objective of this forum, held on June 9 and 10, was to identify specific customer needs, business opportunities, technology needs and specifications for technology solutions meeting those needs. Approximately 75 people (collectively referred to as "stakeholders") - manufacturers, researchers, clinicians, consumers, government officials, and advanced technology developers - participated in this forum. I was fortunate to be able to be a participant as a consumer.
Four areas with significant potential for improvement through identification and application of new improved technologies were selected. These four areas were:
We were divided into four groups, with each group dealing with one of the four identified areas. We each participated in two separate groups with two different leaders. I participated in the ear mold technology, and infrared and inductive loop technology groups.
The following issues were considered in these brainstorming sessions:
The Need
State-of-Practice
Future Technology and Products
Based on the Forum outcomes, the RERC on Technology Transfer develops problem statements detailing the market needs and business opportunities. It then networks with the researchers, clinicians, advocates and manufacturers. These statements are broadly disseminated to technology developers (manufacturers, researchers, federal laboratories) that are likely to have the necessary technologies or capabilities to develop such technologies. These technology developers submit proposals that are reviewed by a panel of experts in hearing technology, marketing, and technology transfer. The goal is to translate this into commercialization packages that can be beneficial to both the manufacturers and the consumers in a cost effective way.
All participants will receive a copy of the Forum proceedings, including the problem statements that detail the marketing needs and business opportunities.
I will write an update for this newsletter when I receive the results.
This Forum was part of work funded by a grant from the National Institute on Disability and Rehabilitation Research, Department of Education. The Northeast Region of the Federal Laboratory Consortium is also a sponsor for this work.
THINKING OF BUYING A TV? GET THE CAPTION FEATURES YOU WANT!
Deaf and hard of hearing consumers who are considering buying a television set need to know the caption features available on various models so they can choose the one that best meets their needs. The National Captioning Institute (NCI) has a checklist available that describes the caption features of thirteen different brands of television sets so that consumers can easily make educated purchasing decisions.
The checklist is the result of a study done by EF Training Center and partially funded by NCI. For a free copy of the brochure, please send your name and address to: TV Brochure, NCI, 1900 Gallows Rd., Suite 3000, Vienna, VA 22182, or email your request to mail@ncicap.org.
ADVOCACY WORKSHOP GIVEN AT SHHH CONVENTION
Five members of a.b.c. gave a presentation on advocacy at the SHHH National Convention in St. Paul, MN on June 18th. The workshop was based on the latest a.b.c. publication, "Guidelines for Developing an Effective Advocacy Program" (now available for purchase - see League publications catalogue at this website.)
The program began with an introduction by Charlotte Roth, co-coordinator of a.b.c. Paula Brown Glick, Ph..D. then dedicated the workshop to the memory of Sue Bromberg, founding member of a.b.c.
Florence Steiger, co-coordinator of a.b.c., gave an overview of essential strategies for active advocacy. Arlene Romoff, Cultural Affairs, co-chair presented on "Advocacy Style - What Works and What Doesn't." She used her advocacy successes in captioned live theater as examples to explain the various approaches that work well.
Ruth Bernstein, Travel Chair, rounded out the program by describing how her advocacy efforts resulted in the successful "Heairng Accessible London Trip". She showed video clips from the trip, and described how persistence and patience are valuable qualities when it comes to successful advocacy.
A question and answer period followed the presentation. From the feedback from audience members, the program was very well received. One attendee called a.b.c. " a force of nature"!
Checklist for Accessibility to Museums and Historic Sites
by Karin Mango, Cultural Affairs Committee
As mentioned in a.b.c. Reports, Winter 2000 issue, the a.b.c Cultural Affairs Committee's subcommittee on Museums and Historic Sites is in the process of sending out a checklist with an accompanying letter to assess the present access capabilities of local, regional and national cultural institutions for deaf and hard of hearing people, and to offer suggestions and help where the situation is less than satisfactory.
The first round of 30 mailings concentrated on New York City's main cultural institutions and brought a mixed response. Some institutions deserved a gold star of approval, for example, the Metropolitan Museum of Art and The Museum of Modern Art; others lagged considerably.
The second round - 30-plus - has just gone out. These include additional museums and historic sites in New York, and we are now beginning to extend our reach into New Jersey, Connecticut, Pennsylvania, Massachusetts, Virginia and Washington, DC. The first response to come back was from the White House, which, we will all be pleased to know, is as accessible as possible for a site of this kind.
We will follow up on those who did not respond at all, and also on those who did respond, but offer only minimal access, with the new pamphlet "Providing
Effective Communication" and a further letter offering a.b.c.'s assistance in setting up the simpler and less expensive ALDs, in preparation, we hope, for further compliance.
When we have received responses from as many of the whole mailing as possible, they will be tabulated and summarized. They will then be posted on a.b.c.'s website and disseminated elsewhere as needed, and copies will also be available from a.b.c.
HEALTH CARE WORKSHOPS PLANNED - NOVEMBER 1 & 9
a.b.c.'s Health Care Committee is planning to offer workshops to provide consumers with information about their health care rights. The same program will be offered twice at the League for the Hard of Hearing offices - on Wednesday, November 1 from 1:30 to 2:30 p.m., and on Thursday, November 9 from 5:30 to 6:30 p.m. Morning and evening sessions are being provided to accommodate most people's schedules. There is no charge for this program, but registration is necessary. A registration form will be available shortly. For more information, contact the League offices.
STAGETEXT ORGANIZATION FORMED TO PROMOTE CAPTIONING IN UK
Geoff Brown, Peter Pullan and Mervyn Williams are three individuals from the United Kingdom with different degrees of hearing loss who have advocated for some time on the need for text generation (conversion of spoken or sung words to written text) as a means of increasing accessibility to arts and educational venues.
They have given the following update:
Current access provision for people with a hearing loss is restricted to the provision of loop systems or sign language interpretation, neither of which can address the diversity of hearing loss in the community.
We have worked with the Theatre Development Fund of New York who offer captioned theatre performances in New York and arranged to provide two captioned theatre performances in London last March.
Following the success of those performances we formed STAGETEXT in May of this year as a charitable company.
The STAGETEXT mission is to promote and develop the use of text generation systems in entertainment, educational, training and cultural venues in order to increase accessibility for people with a hearing loss, thus enabling them to follow the proceedings on an equal level with their hearing peers and thereby promoting social inclusiveness.
We would achieve this by:
We have met with several arts organisations including the Royal Shakespeare Company and they are working with us to obtain their own text generation system. There is interest now in demonstrations of the equipment, at which we can address concerns. We are arranging captioned performances with the Royal Shakespeare Company in London, Stratford and on tour around the UK. Performances with other theatre companies are being planned.
We are actively seeking funding for our operation and we are pleased to be working in partnership with the ADAPT Trust, a charitable trust with interests in improving access to the arts for people with disabilities.
Client group acceptance will be measured by customer satisfaction survey methods and a continual improvement strategy will be deployed.
Following successful demonstration of our ability to offer scripted captioning for theatre productions, we then plan to offer real-time captioning with the same equipment for meetings/workshops. These would aim to give people with a hearing loss full access to educational/training on a variety of subjects. Usually such meetings or class environments involving a number of people prove to be very difficult to access for people with a hearing loss.
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