Volume 36 Issue #1 Winter
Association of Late Deafened Adults
Winter 2020 Newsletter
Volume 36 Issue 4
In His Own Words…
President’s Letter – Winter 2019-2020
As we move into the new decade, there are several new developments on the horizon that will affect the deaf and hard of hearing. This became very apparent to me in my recent visit to Washington D.C, where I had a series of meetings that I’d like to tell you about.
First, I met with Mika Donlon, a Securities and Exchange Commission attorney. She and her office focus on people who engage in fraudulent enterprises. In particular, fraudsters prey on the elderly and/or those who have disabilities, thinking they are easy targets—offering bogus stock and investment deals and taking hard earned income and pensions. She will speak at the HLAA convention and would be interested in speaking to ALDA—even putting together a panel of experts. Hopefully, good news on that front is on the horizon. We could learn a lot from her.
I attended the Deaf and Hard-of-Hearing Consumer Advocacy (DHHCAN) meeting, which I wrote about in the last newsletter. DHHCAN is composed of deaf and hard of hearing advocacy groups from across the spectrum, from NAD to HLAA and beyond. I appointed Barb Martin as our representative to replace Dr. Bernie Palmer, who moved to Florida. She, Wendy Ting and myself attended the meeting. There are many new and innovative technologies that the network is involved in and I hope to keep the members informed as the issues percolate.
Wendy Ting, and I attended a meeting with the FCC and we talked about a number of topics. One involved the difficulty for establishments with multiple TV’s (e.g. fitness centers, sport bars) have getting captioning signals for all their TV’s. We have been advocating for FCC to regulate and enforce better signals and FCC stated they are moving on it. We discussed C.A.R.T (human captioning) versus ASR (Automated Speech Recognition) and our concerns the FCC is pushing the implementation of ASR over C.A.R.T. prior to first ensuring whether ASR is as accurate as C.A.R.T. The FCC has not made any final policy decisions, but they discussed their views openly and may have interest in presenting at this years convention. Seeing that this is a cutting edge issue near-and-dear to our hearts, I am sure most of us would be keenly interested in this.
Finally, we met with the Staff Administrator of the Cochlear Implant Alliance, Donna Sorkin. Some of you may know her since she was formerly with HLAA as it transitioned from SHHH after Rocky Stone passed away. She was also with AGBell for a spell and with Cochlear Corporation as well. The Alliance includes the doctors who do cochlear implants. We hope to work together in the future on issues of mutual interest. Like the others, the Alliance may be interested in presenting to our convention on emerging technologies affecting cochlear implants.
So, we are getting our ALDA name out there and establishing a footprint with the decision-makers. People know who we are. We plan on that to continue. This is going to be an exciting decade and ALDA is going to play a major part in it.
ALDA 2020 Board of Directors
Thank you for your support!
Contact us to get involved or share ideas: alda.org/contact
President: Rick Brown
Past President: Sharaine Rawlinson Roberts
Vice President: Cynthia Moynihan
Secretary: Tina Childress
Treasurer: Matt Ferrara
Region 1: Laura Sinclair
Region 2: Diane McDonagh
Region 3: Debbe Hagner
Region 4: Michelle Yook
John Waldo, Esq
ALDA Advocacy –
Where We’ve Been, Where We Might Go
Our ALDA newsletter editor, Grace Avila, suggested the first issue of the new decade to look back where my assistance with advocacy and legal support on behalf of ALDA has been and forward to where we might go. Here are some of our important advocacy accomplishments and my personal speculation about the future:
Movie theaters really became accessible to people with hearing loss. The Ninth Circuit Court ruled the Americans with Disabilities Act (ADA) requires movie theaters to display closed captions on individual viewing devices for any movie distributed with such features. ALDA signed onto a friend-of-the-court brief I wrote and, while attending the oral argument in San Francisco, I met Linda Drattell, a past president of ALDA, which lead to a long, productive association.
Lawsuit filed against Cinemark movie chain in California to require captioning with ALDA as the organizational plaintiff and ALDA members, Linda Drattell and Rick Rutherford, as individual plaintiffs.
Cinemark agreed to provide captioning for all movies at all of its California theaters. In response to a demand letter, the AMC chain agreed to do likewise.
AMC, Cinemark and Regal agreed to extend their every-theater captioning commitment nationwide, prompted by ALDA’s California case against Cinemark and our Washington advocacy group state-law case in Seattle.
The federal Department of Justice proposed nationwide requirement for all move theaters to provide equipment to show pre-formatted captions – stating regulations were intended to uniformly apply the results that ALDA cases had achieved. In brokering on behalf of ALDA, meetings between the advocacy groups and the National Association of Theatre Owners (NATO) lead to filing joint comments agreeing to an every-theater requirement.
ALDA efforts turned to live theaters and successful negotiations with both Broadway San Jose and Berkeley Repertory Theatre in California who agreed to institute live captioning.
ALDA and the National Association of the Deaf (NAD) partnered to advocate for every-seat, hands-free captioning of all aural information at professional sports facilities.
ALDA’s long-time advocacy chair, Cheryl Heppner, retired, and I assumed part of her advocacy function.
TheatreWorks Silicon Valley agreed to caption performances at both facilities and provided four free tickets for the first year to Carrie Levin, who had requested the captioning.
The Fabulous Fox, a large live theater in St. Louis, Missouri, lawsuit filed when Fox stated it would offer ASL interpretation only, not captioning, for touring performances. We requested assistance by letter and eventually filed suit on behalf of ALDA, our ALDA member Tina Childress and eventually the HLAA St. Louis Chapter joined as a plaintiff.
The federal Department of Justice finalized its nationwide movie-captioning regulations.
The Shubert Group, the largest owner of Broadway theaters, assembled an New York advisory group to review program development to offer captioning at every show and from every seat in the house. ALDA later joined after pointing out over two-thirds of Broadway theater attendees come from out of town. Tina and I are part of the group and one, or both of us, meet twice a year to test the GalaPro smart-phone app (which uses lighting cues and voice-recognition software to display already prepared captions in sync with the pace of the performance).
Fox theater in St Louis began offering a single captioned performance of each of its productions. Fox, however, turned down our request to provide captioning whenever asked to do so.
The federal district court in St. Louis ruled against Fox with a single caption performance. Fox was now required to provide captioning whenever requested unless it could show that doing so would impose an “undue” financial burden. That ruling triggered more live theaters of all sizes to find ways to provide every-performance captioning at a reasonable cost. Fox appealed the ruling.
ALDA became an organizational plaintiff in a lawsuit filed in Seattle asking movie theaters to provide captioning for “alternative content” like Metropolitan Opera performances, Broadway and London stage plays and classic movies many theaters show periodically . The theaters felt they were not required to do more than what the 2016 federal rule to provide captioning for every movie that comes with pre-formatted captions. The federal district court agreed and dismissed the case. ALDA appealed.
Advocates in Washington, D.C. introduced a local ordinance to require some OC movies. The National Association of Theatre Owners (NATO) held a meeting with advocates, including ALDA member, Wendy Ting and myself. A number of D.C. theaters agreed to voluntarily show some OC movies, and NATO engaged Ernst & Young to assess the economic impact to the theaters and expect a report from E&Y early in 2020. (Closed captioning makes movie dialogue available, but the devices are inconvenient and failures are frequent. Many deaf/Deaf and hard of hearing people prefer open captions (OC), in which the captions are displayed on the screen)…
The court of appeals upheld Fox case ruling whereby every-performance on-request captioning is required. In response, Fox joined other theaters and purchased the GalaPro app. This ensured most touring Broadway shows can provide captioning at no additional expense.
Court of appeal upheld the dismissal of the Seattle lawsuit. Reconsideration has been requested along with development of potential “workaround” strategies to identify alternative content accessibility.
WHERE DO WE GO FROM HERE?
One thing I’ve learned doing this kind of work is this: If businesses do not believe they are required to provide effective communication, there’s no incentive to develop methods of doing so. Once the obligation is established, there are improved efforts to respond with cost-effective solutions.
The story for the next decade will likely include the following:
Development and refinement of technologies including dramatic improvements in speech-to-text technology to remove barriers. With wide-spread smart-phone ownership/usage, it’s becoming counter-productive to resist phone app solutions.
Speech recognition software will likely continue to find imaginative ways to combine advanced and improving speech-recognition software with distribution systems like StreamText which permits individuals access content captured by that software. The combined efforts could be used in various ways like transit systems and airports, guided tours, small venues and civic meetings.
Good programs are likely to evolve to quickly identify songs from a few introductory notes and immediately access the lyrics, which are widely available, to enjoy concerts. As live theaters move more toward automatic captioning, music may become an increasing emphasis for some live-event captioners.
Increased emphasis for captioning on all internet information. Example: Harvard University was recently court ruled in favor of required to provide captioning for massive amounts of online material, including the free online courses. Similar actions are pending against the Massachusetts Institute of Technology.
Increased awareness of background noise as a disability rights issue.
It all comes back to advocacy. Without advocacy – personal and institutional, through persuasion and education or, when necessary, through the courts – there is no awareness of the problem nor the need for a solution. It begins with us. All of us. When we identify and articulate our needs, a solution can usually be found.
I look forward to the best decade yet and the continued privilege and honor of working through ALDA on these efforts that help all of us.
Nurse On Call
Ann Marie Killilea,
MSN, RN, EdDc
Ask the Nurse — “Paying it forward”
“Pay it forward” means? Simply put, if someone does something nice to you, you do something nice for someone. It may be the same person who needs a hug or a smile from you. Or, someone else in need of kindness. Whoever the person may be, you give back to another person what was given to you.
In my journey years ago back to hearing with my cochlear implant, CI, I have had many people who have helped along the way and I never hearing through my CI for granted.
When I was first implanted, my first desire was to HEAR. To hear the birds chirping, the waves splashing on the shore, the rustle of leaves crunching underneath my shoes as I walked, and so much more. My CI mapping sessions had both good and poor outcomes. Sometimes I was getting sick, or the technician was sick and accommodating the change in hearing was not there. Sometimes, mapping sessions were spot on and I emerged with a new sense of hearing all over again.
My second desire was to COMMUNICATE. It is not enough to hear, but to use my CI to practice good communicate with others. I had to relearn my communication and practice speaking and feel my throat change to determine how to communicate well with my CI. Crowded rooms, restaurants, and churches all posed a different set of problems. With my CI’s, it became a simple click to a certain setting to reduce unwanted noise. So I can go various places and have a good conversation with anyone, including those with accents and voice intonations that used to confuse me.
My third desire was to BELONG, to be part of something I could not do before. I remember sitting in church listening to the Handbell Choir play music. Oh! The music was angelic. It was the most beautiful sounding music I ever heard. The Church bulletin advertised the Choir needed additional “brave” church members to volunteer to play. “Could I do this?”, I quietly said to myself, as I do not hear music very well. This was going to be quite a challenge.
I debated whether to try out the Handbell Choir. I checked to see if I knew anyone in the choir for support and found one of my former friends who was active. I could read music from piano lessons when I was much younger and I could count the number of beats in a measure. HA! The decision was made to try out!
I contacted the Handbell Director and was sweating bullets worrying about her answer. And I did not want to share about being late-deafened until after I rehearsal, if accepted.
Rehearsal began with 10 of us and I was in the middle with bells C, C#, and D to try! I had to read but not play every note which was quite different from playing the piano. There was so much to learn and I was exhausted at the end of the session. I simply wanted to go home and sleep.
I had this feeling that if I stopped right away, I was not meeting my goals or the goals of the doctors, nurses, and technicians who helped me to get this far so I shared with the Handbell Director I was tired but would work hard and that I was late-deafened. She was shocked! She did not notice any difficulty with my hearing during the rehearsal. If you could have seen the smile on my face!
It has been six years since I began learning something difficult and beautiful to do. I have realized my abilities are no different from those who can hear. I learned much and work to understand the Director and tap the rhythm with my foot to keep time in each measure. I practice at home with the songs using forks and knives to tap on the kitchen table. Our Handbell Choir has played at several Masses and at a retirement home. Through it all, I never cancel unless I am very ill. We have a new Handbell Choir director who calls me her “rock” It is fun, tiring, and I am very proud to be a part of this Choir!
A few months back, a little girl asked me at church about playing the Handbells. While talking, she sadly put her dead down, became very quiet and shared she was deaf and wore hearing aids. Beautiful bright pink ear plugs were attached to the hearing aids she pulled out of both ears. But she knew music! Thus opened the opportunity to pay it forward. I opened the case of the big bells, handed her one to ring and provided the glove worn when playing. Upon putting on a glove and ringing the middle C bell, a big smile came on her face as she heard the note! I then showed her my own CI’s. A bigger smile crossed her face. I shared in time and with a little work, she could be part of the Handbell Choir and I would help her. We remain connected today.
“Paying it forward” doesn’t have to cost a thing or be planned out. It comes naturally and is a beautiful gift. How different might the outcome have been if the little girl met a Choir member with no hearing loss? How might it have affected her decision to try?
Yes, I had my three goals to live up to but I stepped out of my comfort zone and persevered. Ironically, playing in a Handbell Choir caused stress and increased my blood pressure. But the absolute joy from pushing myself to play and, in teaching a little girl with hearing loss she can play as well, my stress and blood pressure were reduced. Giving back has given me more.
In 2020 and the new year, may we take time to see what has been given to us and work to give back to others. I have so many things to learn from all of you! We help ourselves when we help others.
Happy New Year to all of you!
Anne Marie Killilea, MSN, RN, EdDc
MATT’S MONEY MATTERS
By Matt Ferrara
New Year, New Decade, New Score, and the start of the new ALDA, Inc. Board for 2020. I wanted to welcome the new Board Members and thank the outgoing Board Members for the time and service. It is appreciated.
ALDA Operation Expenses: $41,509
ALDAcon 2019 Account: $18,057
ALDAcon 2020 Account: -$1850
ALDAcon 2021 Account: -$2758
Scholarship Funds: $28,777
The Balance Sheet for the ALDA Bank accounts as of the end of fiscal year 2019 (Dec 31, 2019):
As of December 31, 2019, the total cash in the ALDA Bank accounts is $83,735. This is subject to change once the Final audit for the IRS 990 Report for 2019 is complete.
ALDACon 2019 was a great success, with payments for late invoices in January of 2020, the net profit is approximately $17,000.
Now is the time to volunteer to help ALDA and I with the Finance Committee. Do you have the right background and can be of assistance with the Finance Committee? Or have suggestions for fundraising campaigns? Contact me at: firstname.lastname@example.org.
ALDA, Inc. is a non-profit corporation and donations may be tax deductible. In addition, some employers have matching donations plans. Feel free to contact me with any questions regarding donations at: email@example.com.
Wendy Ting, Membership Committee Chair
Membership Committee structure for 2020
I cannot believe it is 2020 already! On that note, we are striving to get off to a great start for 2020 to address the membership outreach, renewals, and ways for you to remain connected with us via your Regional Directors. As the Chair of the newly created Membership Committee, my primary goals are to create and streamline the structure of our ALDA organization to improve the communication channels on time-sensitive issues for resolution, among those involved with the membership database management, board members, social media committee, and AN editor, as well as, with the Regional Directors, both inward and outward. We expect the Regional Directors to be actively engaged in communications. Not only communicating among themselves to come up with agreed-on resolutions that will eventually impact the identified issues, but also with you.
Over the next several months, we anticipate this structural process to improve seamlessly and look forward to a successful 2020!
New Social Media Committee Chairperson 2020
Introduction and Goals
ALDA created the Social Media Committee (SMC) in 2019 to improve outreach on social media platforms such as Facebook, Twitter, and Instagram. The goal was to increase ALDA’s online footprint to reach new demographic groups with educational and informative material, help grow membership and increase volunteer participation.
The effort was cut short in some respects by personal life issues confronting several members of the team. Regardless, several projects were initiated and led to the newly redesigned website and helped bring all the current social media platforms, including the newsletter and email outreach, under one umbrella.
Late in 2019 SMC chairperson, David Poland, expressed a desire to step down from the committee and I was approached to take over the leadership role. My name is Jim Laffer. I am a late-deafened individual with bi-lateral cochlear implants. I lead the ALDA San Jose group, work in a hearing loss related field, and as a volunteer mentor for people looking to learn more about cochlear implants. I believe ALDA’s mission of bridging the gap between the Deaf, Hard-of-Hearing and hearing worlds is of vital importance. Our philosophy that people should communicate using “whatever works” for them – because in the end the communication is what matters – should be shared far and wide. ALDA has an important role to play in the hearing-loss world and I am excited and energized to help keep it relevant, growing and thriving for decades to come.
To start the year, our focus will be on continuing and expanding the already excellent communication on Facebook while greatly increasing our Twitter presence. The Twitter outreach will take two forms.
First, we will continue to tweet about national ALDA events/news (including ALDAcon) while sending links to website articles and Facebook posts. This is intended to unify the messaging among the platforms. We look forward to working with local groups and chapters to expand their outreach efforts, where possible. To do this ALDA will tweet information about their events, meetings, parties, etc. both before and after they occur. That way people who know about the national organization but are not members of a local group can find out more information about what ALDA events in their respective areas year round. The goal is to use the larger national platform to help local groups find new members and business contacts. Ideally this will also lead to people, who have no local group, to reach out and ask how to start one.
In addition, the SMC will conduct research into new demographic groups that might be interested in learning more about ALDA or find an organizations that can help them figure out how to deal with issues common to people with hearing loss or unique to their individual needs. Examples include: veterans with hearing loss re-entering civilian life, young hearing adults with deaf babies, recent college graduates with hearing loss navigate the work interview process. Ideally those people will find ALDA relevant to their needs and increase the chance they will join as full-time members.
There are many other projects including, but not limited to, working on new ideas/ways to simplify the group creation process, expanding efforts on Instagram and regular website updates with new articles and educational outreach.
There is exciting work ahead! We welcome people with social media experience to join SMC. If you are familiar with Twitter, Instagram, website or other platforms and would like to volunteer to help with research, outreach and ideas or simply want to submit a suggestion/question, please reach out to me at:
ALDA Social Media Committee Chairperson
Meandering Through A Hearing World
Reflections on Hearing
By Linda Bilodeau
How did your journey with hearing loss begin? Was it a kind friend or spouse who recognized you were struggling to hear? A doctor, minister or sibling telling you that you were becoming reclusive? I have suffered from hearing loss for over forty years and began in childhood. I remember sitting in the classroom, struggling to hear. When I asked my teacher to repeat, I was told to pay better attention to what was being said. No one ever thought the shy, but smart, little girl had a hearing problem. Hearing tests were not common in the late fifties for children.
At twenty seven and pregnant, while working in hospital administration, a kind doctor took me aside and asked, “Do you realize how many times you ask someone to repeat when you’re talking on the phone? You really need to get your hearing checked.” He didn’t take no for an answer and made an appointment for me with an ENT physician.
I was concerned after the audiologist did my first hearing exam. The ENT physician shared I had lost thirty-five percent of my hearing! I was aghast. How does this happen to a normal and otherwise healthy person? After noting I was otherwise healthy, the doctor stated my hearing loss was genetic and it would progress over time. I sat there shocked and wondering how many other young individuals faced such problems. I was concerned for myself and my unborn child. I asked a lot of questions but refused a fitting for hearing aids. I thought to return after my child was born.
I never returned. Like many with hearing loss, I was in denial and it was almost seven years before I returned to wear hearing aids as my hearing was worse and I could not get by without help.
Today, I live with a profound hearing loss. My hearing aids are my constant companions, along with my cell phone, my iPad, my apps, and my television adapter. I praise loops in public buildings. I’m thankful when someone takes the time to talk slowly with me. I love my understanding friends who realize that I do better socially if I’m with just two other people instead of sitting around a table of eight or ten, struggling to hear. I try to understand those who drop from my social world with an unwillingness someone with hearing loss.
There have been tears and despair, and a few anxiety attacks over the years. There have been times of sheer joy like obtaining my graduate degrees and when I met my current husband, the most understanding man on the planet. He loves me and married me knowing full well he would be living with someone with hearing loss. He accepted all the ramifications from such a life. I have asked him if he regrets being with me, if he might have been happier with a ‘normal’ woman. “No,” he says. “I consider you normal. You can understand me and that is all that matters.”
So it goes with the good, the bad and the ugly of hearing loss. There is the sorrow we feel, the mourning of the loss. And there is hope for new and better technology, drugs, operations, the things to help us hear. There is happiness in knowing that there are friends and family and support groups with a place to go like ALDA, who see us as the wonderful people we are.
CHAPTER and GROUP Happenings
Thanks to our ALDA Chapter and Groups we are reaching more individuals dealing with hearing loss and late-deafness. Support your local Chapter or Group or start your own today!
Per the new submission guidelines provided, ALDA chapter and groups can now submit their reports directly to ALDA News Submissions firstname.lastname@example.org.
Please advise if your chapter/group are using other outlets to share your news and events.
One of Us
This issue’s interview is with Diane McDonagh.
Greetings! A very upbeat way to start the New Year is an interview with Diane McDonagh, who was just elected as ALDA Regional 2 DIrector. Diane hosted a fun sign language workshop at ALDAcon 2019 in Kansas City, where I first met her, though I remember seeing her before. I was amazed to find out she was born in Evergreen Park, Illinois, a southern suburb of Chicago very close to where I was born and raised. Her father worked for the Army and Air Force Exchange Service and the family moved from one place to another every 4 years. So Diane has no “hometown” to speak of. She currently lives in Shoreview, Minnesota, a suburb of St. Paul.
Diane was born profoundly deaf as her mother contracted German measles while pregnant with her. Many people think she is hard of hearing as she speaks so well. Diane is divorced and has two wonderful grown children and four grandchildren. Two additional grandchildren are expected this March. She works as an ASL Professor and has been teaching at NHCC for 39 years and 23 years at Augsburg University. She is supposed to retire this year, but shared she is not ready. She will follow her heart when the time comes right. Read on to discover why Diane is definitely “one of us.”
KK: What book or books do you recommend others read?
DMcD: Hmm, it’s funny! I am an author and wrote a book called “That’s ASL Visualization of American Sign Language, Edition II.” I am also planning to write an autobiography. I think when I decide to retire, I will have enough time to write. As for other books, this is a good question. One of the books that is my favorite is “The Giving Tree” by Shel Silverstein.
KK: You simply cannot live without….
DMcD: I have two things to say #1. I cannot live without wearing my hearing aids. I need to hear beautiful sounds such as music, people’s voices, etc. If my audiogram gets much worse, I may get a cochlear implant. I cannot promise. #2. I cannot live without eating my favorite dark chocolate. Smile!
KK: Your little known talent is:
DMcD: Hmm, I have more than one talent. I am good at swimming and was on the swimming team while in in high school in Hawaii. I also like oil painting, giving presentations, reading, and helping people.
KK: The hardest thing you’ve done is:
DMcD: The hardest thing I have done is having to say goodbye so many times when I moved throughout my childhood. Every four years, I would have to start all over and make new friends again. That’s why from now on, I say, “I won’t say goodbye but I will see you later.”
KK: Your funniest hearing loss moment is:
DMcD: I was training my dog in San Diego, California when I was a college student. I said “sit down” several times. My parents were laughing so hard. I asked, “What’s so funny?” They answered “You said sh*t down.” Gasp! I was so surprised and of course I cracked up. It’s difficult for me to hear the difference between “s” and “sh.”
KK: When and how did you learn about ALDA?
DMcD: Debra Clancy, a member of ALDA, recommended that I attend an ALDA conference in Milwaukee about 4 years ago. Once I got to know the attendees, I knew it was the right place for me.
KK: Do you belong to an ALDA chapter or group?
DMCD: No, I simply decided to participate at the ALDAcon alone.
KK: Have you ever attended an ALDAcon? If so, which ALDAcon was your first conference?
DMcD: Yes, in Milwaukee, Wisconsin.
KK: In what ways has ALDA enhanced your life?
DMcD: ALDA members are so friendly and welcoming!
KK: Who or what inspires you the most?
DMcD: Wendy Ting inspires me and made me feel like I have a second home with ALDA.
KK: People would be surprised to learn that you…
DMcD: People are surprised that I am profoundly deaf.
KK: Your biggest pet peeve is:
DMcD: I do not like when hearing people say that I am handicapped, or when they ask if I can read lips.
KK: Your favorite childhood memory is:
DMcD: Hmm, it is hard to choose because I have so many good childhood memories with my family. One favorite childhood memory is at Mill Neck Manor School for the Deaf (oral method) in Long Island, New York. I saw a girl who had no arms and used her feet to write and for her eating utensils. It was incredible. She sat by herself and I opted to sit next to her daily for lunch and keep her company. I am not certain if she was deaf because she spoke to me. But I was so young, 5 or 6 years old.
KK: Your favorite saying is…
DMcD: “Sh*t happens” and “That’s the way it is”!
KK: The bottom line is…
DmcD: “Never give up!”.