Volume 36 Issue #2 Spring
Association of Late Deafened Adults
Spring 2020 Newsletter
Volume 36 Issue 2
In His Own Words…
I read somewhere that people with significant hearing loss have been practicing “social distancing” for a substantial portion of their lives. We know what it’s like because we live it. That isn’t because we want it that way. It’s because of the hand we’ve been dealt. This is especially so for people whose first language was English and spent their growing up years with hearing persons in a hearing world. And now….. Well, let’s just say it’s been an adjustment.
ALDA, Inc. is open to all, no matter our pasts, no matter how we lost our hearing, no matter whether we grew up in a hearing world or not. We all interact with the hearing world nevertheless, so we know what it’s like to feel isolated at times, to be alone, to be at a table with hearing people while out to dinner and yet not be part of the conversation. We know what it’s like when, because we don’t carry a big “I am deaf” sign around our necks, people forget that we’re deaf and don’t look at us when they are speaking. We know first hand that there are hearing people who get annoyed that they have to make an effort to engage with us. That’s why we’ve developed the “deaf nod” and made it into an art. So, yeah, we know all about “social distancing.”
These trying times have reinforced, in my mind, why ALDA is so important to all of us. It reminds us that this organization is where there is no social distancing. We understand each other’s communication needs and do “whatever works” to bridge that gap. We volunteer for this organization, and it’s why we look forward to our conventions so we can be with each other and not have to worry about the social distancing that takes place so often in our daily lives.
– HLAA has had to cancel its June convention
– NAD has had to cancel its July convention
Our convention is in late October, and I fervently hope that the COVID-19 restrictions currently in place will be a thing of the past at that time.
I am optimistic that we will meet and be so happy to be together because the moment will not be lost on us. We will be able to experience something special to be together.
As of this writing, the 2020 Niagara Falls convention is still on. But your Board is constantly monitoring the situation and it may yet be cancelled or postponed. In the event the economy opens up and the Board feels it safe to proceed, I urge you to sign up and come. And if not, I urge you to come to the 2021 Con. If this virus has taught us anything, it is that our time on earth is precious and how wonderful it is that this year, over all other years, going to the convention would provide us with a much needed breath of fresh air and hope for the future.
Honoring Roy Miller, an ALDA icon
The Association of Late-Deafened Adults, ALDA, Inc. was saddened to share our long-standing and one of the founding board members and hearing loss advocate Dr. Roy E. Miller passed away March 10, 2020. He was with his partner Carol Sliney and family by his side at his home in Albuquerque, NM. He passed away at the age of 80 after battling esophageal cancer.
Roy remained active in a variety of organizations as a fearless advocate for the late-deafened and those with hearing loss. Read more here: https://alda.org/honoring-roy-miller-an-alda-icon/
ALDA 2020 Board of Directors
Are you ready to make a difference? Have news to share? Contact ALDA today: 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
by John Waldo
For the last dozen years, ALDA, Inc. has been a leader in implementing the benefits and protections of federal and state disability laws to make the world a more accessible place for those of us with hearing loss. We have played a major role in securing closed captions at movie theaters, on-request captioning at live theaters, and scoreboard captioning of public-address announcements at professional and major-college sports venues.
Despite all, the COVID-19 is changing a lot of this hard work. As of April 2020, the places noted are currently closed. Most will re-open after the shelter-in-place is lifted, but what will these places look like after?
For example, live theaters: Broadway theaters are often small and compact. The seating is often very close together and they are almost always full thereby making social distancing difficult at best.
Live theaters base profits on selling a relatively high proportion of the available seats. If the theaters re-open with a confined six feet or so separation from each other, either voluntarily or through regulation, can that model be sustained? And if not, what time length is required for the business to adjust their own economic demands to a new reality?
Ironically, movie theaters have it much better. Other than the opening few days of the one or two real “blockbusters” released each year, movie theaters are seldom very full. AMC, the largest movie-theater chain, has shared it might limit attendance at any showing to 50 people when reopens resume. That is, in fact, not many performances as few have more than 50 attendees in any event.
For many years, movie theaters have enjoyed a 90 day window whereby the studios make the movie available only to theaters only, not to online or television. With all the theaters shutting down, some studios now offer immediate movie access through their own streaming service. People now pay to stream new releases such as “Emma” or “Trolls World Tour,” for about the same price as two movie tickets.
The question remains whether the 90 day theater-only window will be reestablished after the pandemic closures. Regardless, there is a real reason for concern. Theaters have stated the studios make some 60% of their revenue from the theatrical release. Is this due to movies are in theaters, or strictly because it is the only way to see the movie in the first 90 days? The recent COVID-19 closure will provide studios the option to answer that question and whether the studios will retain movie theater options or determine they can improve profits by cutting the theaters loose.
Several financial investors are betting against movie theaters. AMC and Regal, the two largest theater chains in the United States, are exploring bankruptcy proceedings. Cinemark, the third largest chain and the only one still American-owned, may look to borrow more money.
Regardless – mainly the superhero blockbuster types – appreciate the big screen for full enjoyment. One encouraging sign is the poll in China which found the majority of people sharing they will return to the movie theaters when they re-open. (AMC is a subsidiary of Wanda, a Chinese company). For the smaller “art house” theaters, whose product may adapt just as well to the home screen, the same may not apply.
Entertainment is migrating to new delivery platforms for the time being. Our job as advocates is to ensure the accommodations for deaf and hard of hearing people migrate along with the content.
So far, things seem to be working reasonably well for us. First-run movies released immediately for home viewing have come from the major studios, all of which have committed to providing captioning for every movie. The captions are also available when the movie is streamed. As to whether the smaller studios be as willing to provide captioning – that remains unknown.
The federal Americans with Disabilities Act will become considerably less powerful when the content moves from a physical location like a movie theater to home viewing. ADA places the obligation to provide services like captions on “places of public accommodation,” private businesses like theaters and sports arenas. When we remove the physical “place,” the accessibility obligation disappears as well.
One federal circuit court of appeals has declared online entities that serve the same function as those physical places – Netflix, in that case — are subject to the same ADA obligations. This ruling is restricted to Massachusetts, New Hampshire, Maine, Rhode Island and Puerto Rico. Other and much larger circuits have ruled the other way. Ideally, we would like to see Congress amend the ADA to incorporate online substitutes for brick-and-mortar businesses, but that does not appear idealistic at the present time.
What will live theaters do? Broadway HD streams filmed performances of vintage productions, and those are not captioned. Some of the more recent Broadway material is available on Netflix, and thanks to the efforts of the National Association of the Deaf and a crackerjack legal team, all of that material is captioned. London’s National Theatre also offers some streaming material on YouTube, most of which is captioned.
What is happening is a fundamental change in the way entertainment of all sorts is delivered. The potentially bad news is that we may lose some of the past legal “tools” to ensure entertainment is accessible to us all. However, the good news is we have not lost much actual access and can sustain access for everyone going forward. This includes staying vigilant in asking for what we need, and if necessary, in the development of new legal strategies that can make those requests a reality.
The Global Pandemic Through
the Eyes Of a HoH Student
by Grace Avila
It is so easy to take our everyday lives for granted and not be aware of what we are missing until it’s gone. In mid March, my university announced all classes would be online for the remainder of the semester. I moved out of my dorm the following week and have been home ever since.
I require CART captioning to participate in my classes because I am hard of hearing and rely on body language and other visual cues to participate in class. I loved the in-person learning experience to get the most out of my education but yet, with one email from my university, all of that was gone.
Online courses held through Zoom definitely aren’t as fulfilling as in-person. The classes are often boring and it is difficult to engage via a screen. Sounds come out of my laptop, but they don’t mean anything to me. I must see the words to understand. And it is difficult to stay motivated! I try to remember this is not extended summer break and I still have work to do.
On video conferencing, Zoom glitches and computer crashes often leave me frustrated and I do feel more tired from any level of video conferencing. (Listening fatigue is real!).
Over the past weeks, I have learned how to push myself to class participation, to be open to change, and to get creative with how to engage in class and with friends.
I feel when all this is over, I will have a greater appreciation and gratitude for my friends and my education. It can be easy to dread going to class and offering a response for in-class participation points or to feel lazy on weekends and binge Netflix or read a book instead of being with my friends. But when all of this is over, I do not wish to take anything for granted again. I want to do more things with my friends and be the best student I can be.
When the dust settles, I look forward to saying yes.
ALDA Region 1:
First Quarter 2020 Report with
ALDA Boston Chapter and Seacoast NH Group:
by Laura Sinclair
Jumping on the ALDA Board, literally, right after New Year’s Day, I am learning the ropes and catching up on all the work that goes on behind the scenes to keep ALDA National reaching and growing. Boom!… side-lined by my first illness of the year, thus missing the Jan. 5th ALDA Boston New Year’s Brunch with guest speaker Karen Moss of the Museum of Fine Arts, Boston. Karen ASL interprets for a steady group of participants several times per year and is one of our region’s “gems”. Thank you, Karen! Meetings are held at a suburban hotel and hit all the notes of a fun social meeting and Chapter and/or National membership renewals. The HearatBoston.org is a well-organized and well-attended Chapter with 20-40 in attendance at monthly meetings with elections to be held this spring…(or later, as the case may be).
Jan. 11th was the ALDA Seacoast NH Group’s first meeting of the year at Verdant Pastures in Epping, NH. As the Leader, I was able to do double-duty explaining ALDA National’s structure and my duties as newly appointed Regional Director 1 (which covers half the Atlantic seaboard, Eastern Canada and most of Europe), encourage dual-membership, and promote the yearly ALDA Convention. Since our new group meets only a few times per year, we are still navigating the basics of group organization and all it takes to pull off a successful meeting and membership drive. With 20 attending, we were thrilled to have projected CART services and a temporary loop system! NH allows each constituent Part B funds to pay for CART services once per year for some personal event so we take turns applying through our state non-profit, Northeast Deaf and Hard of Hearing Services. We shared about the loop system for those who understood the use of the telecoil in their personal devices and mic services for those who lacked the T-coil option. A pocket talker is always available with a headset or neck loop, as well. We added 5 memberships to our numbers and enjoyed tasty “leftovers” from the holidays. Next up event, cross-country skiing & snow-shoeing on the fields with a bonfire & hot dogs over a fire pit, snow-cover permitting… Cross fingers!
The auditorium owner recently shared a permanent loop system is now slated for installation! This will help open equal access to the entire community for other events held here such as the Epping Community Players who put on multiple plays each year. So excited!
We encourage the Players to use mics when possible and hope this provides the initiative expands in the coming year. Recent musicals were cancelled. However, auditions for “Anything Goes” will get started at the other side of COVID-19! The show will go on!..maybe.
Jan. 15 — I attended the Advanced Bionics presentation at Verdant Pastures and met AB representative Sarah Laurello who recently took over the Consumer Outreach position. She kindly provided the opportunity to share about ALDA and our Group meetings, exchange contact cards and participate in the Q & A segment about cochlear implants. It was so rewarding to reconnect with an attendee I hadn’t seen in many years!
Jan. 22 — I attended my first video ALDA National Board meeting with CART, which was all new to me. Little did any many of us know this type of platform was soon to be the norm for everyone in lieu of face-to-face meetings! One issue near & dear to me was brought up with the inconsistent captioning on TV’s. I had contacted the FCC about this problem at my Planet Fitness gym more than once, but finally connected with the help of ALDA Pres. Rick Brown’s Jan. meeting with the big guys in Wash., DC. Unfortunately, by the time it was “fixed”, the gym was closed due to COVID-19 so there is no way to confirm what has taken place. It might be with this big, long rest, the TV’s will all magically turn back on with proper captioning!
Feb. 8 — I attended ALDA Boston’s Chocolate Extravaganza in honor of Valentine’s Day. The speaker Jonathan O’Dell from MCDHH (Massachusetts Commission for the D/HOH) presented a historical narrative of the position he has held many years, now known as CATTS (Community Access Training and Technology Services) to help Mass. residents with communication access. Little did I know he would later be behind the COVID-19 Communication Chart for those D/HOH that has been dispersed widely! I was invited to introduce myself as the new RD#1 and open the floor for ALDA questions. I met several attendees who later would become familiar faces on the multiple Zoom chats in the D/HOH community! I hope to see some of these faces in person again soon!
Feb. 15 — The ALDA NH Group’s Snow Festival turned into a movie/lunch outing due to scant snow. We did request a loft area all to ourselves and most of us viewed the 6 Oscar award winning movie “Parasite”. This was subtitled in English so no one had to request CaptiView. I truly felt for those who are not used to “reading” the movie script as this was very fast dialogue. Regardless, we vowed to try again for snow (NO) fun in March.
March 2 — I was invited along with member Linda Bieber to Akouos in Boston. As a musician and former music teacher before her hearing loss, Linda rounded out a panel of five deaf-experienced panelists for this outreach by the company to put a face to the condition. Akouos means “listen” in Greek. Here is their mission statement: “Akouos is building the leading gene therapy company focused on hearing disorders. Our objectives are to restore the inner ear’s ability to produce functional proteins required for hearing, rejuvenate structures of the hearing circuit critical for high-fidelity signal transduction and inner ear homeostasis, and reinforce healthy hearing with local, enduring protein production to protect against drug-, noise-, and age-associated ototoxicity”. We were invited to mingle with the scientists, ask and offer information, and tour the test labs, donning PPE (not really) enough to not have us contaminate the areas. Watch for Dr. Mike McKenna and his team for future DNA treatments! Similar in-utero replacement DNA treatments are undergoing in Oregon by other scientists, as well as, across the globe for conditions such as Menieres and Usher’s syndrome.
March 3 — I attended a renovation meeting with our town Librarian and fellow ALDA member, Andrea Kaneb, regarding our initiative to loop the largest of the community rooms currently under construction. And funds were already in the budget for a projection system so we can look forward to fully accessible gatherings without having to lug in all the equipment! We discussed the possibility of adding ASL language to the drop-in language tables that started this year. Currently French, Mandarin, Japanese, English & Spanish are offered. I have feelers out to the D/HOH community to for those with some fluency who might host a weeknight here & there. This is on hold but the renovation might be done ahead of schedule due public closure during COVID-19. (on an aside, a few ALDA Seacoast NH Group members attended a local looped church service during Advent. The pastor is the NH Commission for Hearing Loss Legislative lead House Representative serving on the Health, Human Services Elderly Committee). Loops are gaining awareness! Be certain to find out about looping in your community!
March 5 – My second ALDA Board meeting…getting the hang of this!
March ??? – I planned and un-planned a week of ALDA activity anticipating a visit from ALDA Vice President Cynthia Moynihan at the end of the month which had to be cancelled. What a disappointment! And there was no snow! What a disaster of a winter and lousy start of spring! Meanwhile, I am testing a Lipreading course and hopped on new ALDA Boston members Linda Marple and Dianna Landers’ Meet-Up “Our Hearing Loss Journey” virtual visit a couple of times via Zoom. This is ideal as it takes me too long to drive for an actual meeting! My plans were to be physically present for ALDA in my region. But for now, it will suffice with electronic outreach.
In the interim, I continue to field contacts through the ALDA website from NJ & MD. Please feel free to contact me via alda.org. ALDAbest!
Meandering Through A Hearing World:
Staying in Touch during a Pandemic
by Linda Bilodeau
By the time the governor of Florida issued stay at home orders for our area, my husband and I had already hunkered down. Our former careers in healthcare provided the knowledge that hospitals might be overwhelmed with cases of COVID-19 and our own sheltering would help decrease the chances of getting sick and help slow the spread of the virus.
It took time to adapt to our new lifestyle. We are not accustom to planning meals two and three weeks in advance. With having to curtail our grocery store and pharmacy trips, we stocked our refrigerator, freezer, pantry, and medicine cabinet as best as we could. However, after two weeks of being alone, we began missing our friends and family. We connected with those closest to us, asking how we might stay in touch. They were delighted to hear from us and we found ways to connect, swap stories and share news.
My husband’s daughter requested Sunday evening Face Time sessions. During our conversations, we trade recipes and other family information with both her and her husband. With my made-for-iPhone hearing aids, I can listen to and see our daughter and her husband in their living room, three thousand miles away. We feel ever so much closer thanks to this technology.
Last week I had an hour long conversation with my sister who lives fifteen hundred miles away. It was lovely to see her face and hear that her two sons had not lost their jobs and were working from home. In addition, my new grandnephew, born at the end of January, remains oblivious to COVID-19 as he sleeps through these sheltering days.
As you can see, I have become acquainted with various ways to connect like those noted on the ALDA, Inc. website Communication While in Isolation.
One option is the GoToMeeting App. Plans start around twelve dollars per month for the meeting organizer and others must be invited to attend a meeting (other attendees do not require the paid account). One nice feature is the option to see the participants face! This allows me to actively participate in the conversation as I can see and hear those in attendance. The microphones can be turned on and off to help eliminate background noise. Often those who meet use the rule of raising your hand when you wish to speak. This allows one person to speak at a time and help eliminate chatter that might not be understood.
I was recently introduced to Zoom, a free video chat App that is similar to GoToMeeting in that the meeting’s organizer sets the date and time and participants are given a unique username and password. Zoom has a safety feature which allows the meeting’s organizer to close a session once all invitees are present, thus preventing hacking. I remain connected with a women’s group and my Saturday morning Tai Chi classes this way. In addition to Zoom, Skype is another available option for face-to-face conversations.
I am also sending out long emails to my friends who enjoy writing. I enjoy crafting these virtual letters. It reminds me of taking up a pen as we used to do before computers came along.
While meandering through this upside down hearing world, it is important for us to be creative and find new ways to connect with one and another. By talking with friends and family, we share our thoughts, fears, and coping skills, which ultimately helps each of us get through these difficult days.
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
by Karen Krull
This issue’s interview is with Laura Sinclair.
Laura Sinclair was elected to the Board of Directors representing Region 1 in 2020. I remember seeing Laura in passing at a couple ALDAcons, but do not recall the pleasure of actually meeting her.
Laura grew up in southwestern Connecticut, in a small country town of Monroe located on a dirt road next to the train tracks. The dirt road later became a major thoroughfare and Laura can hardly recognize the diverse suburb of NYC when she visits now. She has called Exeter, NH home for the last 26 years and is 10 miles from the coast (yes, they have one!), 10 miles from Maine, and 10 miles from Massachusetts.
Laura began loosing her hearing bilaterally in her late teens and it became a problem in college. However, she did not wear hearing aids until she was 28. Laura qualified for cochlear implantation at 45, which is when she considered herself technically deaf. She has been married to her high school sweetheart for 35 years and has 2 hearing children.
Laura mentioned that her husband has plowed through her deaf journey and back to the miracle of hearing with cochlear implants. He’s built quite the filter of sensing what she might have misheard and making necessary changes proactively, yet they still have the “ha-ha” & not so” ha-ha” moments, like in those moments when he realizes she has taken her bionics off momentarily. They run a budding manufacturing business, but Laura still has time to devote to hearing loss advocacy. She served 12 years on the NH Commission and 6 years on the Licensure Board for Sign Language Interpreters. It’s been her pleasure working with others to enact the insurance benefit mandate for hearing aids to all ages in NH.
Laura leads the ALDA Seacoast NH group started in 2018 with several other ALDA members, as well as performing her duties as RD1. Enjoy reading the nitty gritty on Laura, and you’ll understand why she is “one of us”.
KK: What book or books do you recommend others read?
LS: You can’t go wrong with the classics! Sherlock Holmes, Pillars of the Earth, Harry Potter, Frankenstein, Clan of the Cave Bear. I want to read some Hemingway. So little time!
KK: You simply cannot live without…
LS: ….ice cream, preferably mint with peanuts and chocolate chips…and beach walks/runs to make that OK. I blame my husband.
KK: Your little known talent is…
LS: Making travel itinerary and repurposing things so I can afford to travel.
KK: The hardest thing you’ve done is…
LS: Raise my kids and working, all while going progressively deaf. Pretty risky to run a carpool and read lips at the same time! But I have great kids who understand how important it is to guard this precious sense.
KK: Your funniest hearing loss moment is…
LS: A moment I had to be told after the fact. My husband was catching a ride back home with my brother-in-law past my bedtime but had forgotten his key. Cell phones were new then. We had room flashers connected for the landline. Since I wasn’t answering the doorbell, the two guys were calling and the whole house was lighting up the neighborhood. I kept snoozing because we didn’t have a flasher in our bedroom, assuming he was always there to hear the phone at night. The cats were not trained hearing cats and one of my kids finally woke up to let him in. Subsequently we installed hard-wired flashers, sonic boom and vibrating alerts for the fire alarm, doorbell, all phones and alarm clock.
KK: When and how did you learn about ALDA?
LS: I had been to other conventions but in due course, several dear friendships arising from those led me to hear about ALDACon sometime around 2012.
KK: Do you belong to an ALDA chapter or group?
LS: I lead ALDA Seacoast NH Group
KK: Have you ever attended an ALDAcon?
LS: 2013 ABQ, NM (classic balloon festival); 2014 Norfolk, VA (classic elevator story — Marsha & Carol); 2018 Portland, OR (classic karaoke bartender) & 2019 Kansas City, KS (classic new friendships!)…Niagara Falls!..watch out!…here we come!
KK: In what ways has ALDA enhanced your life?
LS: ALDA is a way of life! To those who have been dealt deafness, there is an instant understanding. Members have shown me how to get out of my own way, go forth boldly and just say “Hi! Love newcomers!”
KK: Who or what inspires you the most?
LS: Travel. Seeing the everyday ordinary that people in other cultures and surroundings do with what they’ve been dealt. So much imagination, creativity and resilience! You don’t see that by staying in your comfort zone.
KK: People would be surprised to learn that you…
LS: Know my way around a workshop. My mom is a well-known artist who paved the way for my creative drive. My dad imparted using ingenuity as a work-around for his deafness. He retired from engineering to make custom knives and would have me inspect them, build the leather sheaths using a drill press. He would be proud to see me using routers & belt sanders, torque wrenches & solder guns. Now building glass lathes and formerly a landscape designer, I’ve been able to represent both my parent’s inspirations.
KK: Your biggest pet peeve is…
LS: Technology and gadgets that aren’t ready for prime time. Instructions that say “never” or “don’t” but don’t say why not.
KK: Your favorite childhood memory is…
LS: Having the freedom to explore, tree climb, and dance in the rain…I guess I’m back to that again, just a little less water-proof than I was then.
KK: Your favorite saying is…
LS: “Seek and you will find; knock and the door will be open to you” …which translates to what I really say… “if you don’t ask, you don’t get”
KK: The bottom line is…
LS: Always seek, grow, share. A smile speaks volumes in every language.