I am a late-deafened baby boomer, but I am a bilateral cochlear implant recipient, so I can function pretty well while wearing my devices. Due to my less-than-perfect hearing, I arrive at these events well in advance to ensure good seating. On this particular evening, I was able to get a second-row seat in the center of the event area. Eager and ready, I pulled out a small microphone that serves as an assistive device to supplement my cochlear devices. Needless to say, staying connected to our world is a priority those of us who suffer from profound hearing loss need to keep up with.
As the program began, the crowds clapped and you were seated. It took a few small adjustments to make sure the store’s microphone for the event was working optimally. I sat in my seat feeling somewhat conspicuous pointing my personal microphone in your direction. As you looked straight ahead, I did my best to hear the program and get the full benefit from assistive technology. But wait. Did I spot at least one hearing aid when you turned your head? Perhaps then, you would understand why I was pointing this tiny device in your direction. I was trying to get the full benefit of your words.
Right before the questions from the audience began, you stated you had a confession to make. You informed the audience that your hearing is not what it used to be, preparing them for the possibility of not hearing a question or even answering it inappropriately through no fault of your own. Then you went on to tell the audience about Walter Cronkite who suffered from hearing loss in his lifetime. You added a humorous story that so many of us whose hearing is not what it used to be can relate to.
But it didn’t end there. A young man in the audience with a small child opened a discussion about race. He said that he looked around the room and there were few people in the audience that looked like people “where he comes from.” It was so important that the young child with him could witness your insightful response. It was also important to me that this young child heard you speak openly about your own hearing loss, sometimes with the humor we all need to keep things in perspective.
Finally, often on social media I see young people with hearing loss or culturally Deaf individuals ask what kind of job someone with hearing loss can do. You validated the point that persons with hearing loss can be whatever they want to be just by being present and speaking candidly. Hearing loss is a disability, and unfortunately issues concerning persons with disabilities is an often forgotten part of discussions about diversity.
Getting back to that small child, through your words, the next generation was reminded that although change often comes slowly, an open discussion gives a voice to those of us who have felt on the outskirts of society for whatever reason. Mr. Rather, that is something that unites us, and I thank you.
I remember back in 1989 when I received my first closed captioning machine. My family and I sat in front of the television waiting for the machine to shoot out words by newscasters, TV sitcoms or documentaries. The machines were slow and sometimes they produced garbled or incorrect stories that made no sense. But I was grateful to have the opportunity to watch television again. Of course since 1990 all TVs 13″ or larger are required to include a closed-caption option and this soon made the devices obsolete. In the decade that preceded my closed-captioning experience I watched little television. Many shows were not captioned, and I had difficulty following the words even with assistive devices.
I also had trouble hearing on the telephone, so that created struggles both in the workplace and with staying connected with friends and family. Few people understood about the relay and TTYS. Today, there are several companies that offer captioning for both landline and cell phones. Smartphones have helped to keep Deaf and hard-of-hearing people connected. Some doctors now allow notifications by text or email.
Forget music. I just couldn’t make it out before I received my cochlear implants. It was like I was living in a silent movie.
When I think back to times when my children were growing up, with every year that my hearing loss accelerated, I was inclined to tune out more and more. That was not fair to my family and counterproductive to effectively communicating.
I did my best to “pretend” I was a person who could hear well in the workplace. Some of my work experience includes being an executive assistant who took dictation over the phone from anywhere in the country, event planning that required I function and communicate well at social events in well-known NY City hotels, being the world’s worst real estate agent, working in the time-sensitive corporate world and finally being a college professor with over 30 students in each classroom. By the time I came home from work I was exhausted. There is tremendous energy required for a person with hearing loss to function in a hearing world. At the end of the day, as ironic as it sounds, many people just want to go into a silent world. But that’s no excuse!
One of the hardest things in my opinion is socialization with hearing loss. Hearing loss is often misunderstood, and people don’t know how to react. Some shout at us, others over-annunciate their words. Some say “Never mind” when we don’t hear what is said. Frankly, there are some who find it too much work to communicate with us, but let that be their problem. There are plenty of good people in the world, and we must pick ourselves up and keep moving forward.
We now know that isolating ourselves can cause depression, cognition issues and affect our interpersonal relationships. It does get hard, but hearing loss is a sink-or-swim issue. Stay connected or you will likely suffer repercussions in every area of your life.
After reflecting on all this I have concluded that I am guilty of what so many of us are guilty of. Without realizing it, we resort to a world of solitary confinement. If we truly want to stay connected with our interpersonal connections, in the workplace and with friends, we must reach out, take chances, and be a self advocate. Are you self-imposing a life of solitary confinement because it is easier?
Today, there are so many solutions to improve the quality of life of persons who struggle with hearing loss. In a future blog, I will talk about some of those products and solutions. In the meantime, stay connected and keep listening to all the sounds of life.
We’ve all been present at some time or another when someone makes a hurtful comment about hearing loss. Often, these comments imply hearing loss and aging go hand in hand.
“The ears are the first thing to go, haha.” How many times have we heard this?
Sometimes we witness people imitating a nineteenth-century horn placed in the ear or cupping the ear imitating how we look when we struggle to hear.
Over the years, one of the main reasons I have heard friends or family give when they are resistant to getting help is the negative stereotype society has placed on wearing these devices. We’ve all seen the advertisements claiming the manufacturer has the smallest device to offer, almost invisible! Finally, the industry has realized that a plastic flesh-colored instrument still looks like a hearing aid. Both the hearing aid and cochlear implant manufacturers have realized that many people really want something that is small or similar to mainstream Bluetooth devices.
Is there any truth that hearing loss is a sign of aging? The short answer is sometimes. Babies are born everyday who are deaf. Sometimes, children who are born deaf have multiple disabilities, and sometimes being deaf is their only disability.
Let’s talk about the adult population. Here are some interesting facts about hearing loss, disease and aging:
“Age-related hearing loss (presbycusis) is the loss of hearing that gradually occurs in most of us as we grow older. It is one of the most common conditions affecting older and elderly adults.” (nidcd.nih.gov)
“A recent study found that hearing loss is twice as common in people with diabetes as it is in those who don’t have the disease. Also, of the 86 million adults in the U.S. who have pre-diabetes, the rate of hearing loss is 30 percent higher than in those with normal blood glucose.” (diabetes.org)
“Studies have shown that a healthy cardiovascular system–a person’s heart, arteries and veins–has a positive effect on hearing. Conversely, inadequate blood flow and trauma to the blood vessels of the inner ear can contribute to hearing loss.” (better hearing.org)
Having a stroke may damage the areas of your brain related to hearing–this can cause hearing loss. (www.nhs.uk)
Dementia – Many of us who belong to the Hearing Loss Association of America (www.hearingloss.org), have had the opportunity to hear Dr. Frank Lin speak. Dr. Lin, as an assistant professor at John Hopkins and an otologist and epidemiologist studies the effects of hearing loss in older adults. According to an article in the January 15, 2015 Chicago Tribune, “A 2011 study of some 600 older adults found that those with hearing loss at the beginning of the study were more likely to develop dementia than adults with normal hearing. In fact, the more severe the hearing loss, the more likely they were to develop dementia; volunteers with mild, moderate and severe loss were two, three and five times more likely to develop dementia than those with normal hearing. (chicagotribune.com)
I found this interesting because as we age, our metabolism slows down: In a 2010 study, Shinichi Someya, et al found that a caloric restriction extends the life span and health span of a variety and species and slows the progression of age-related hearing loss. The study implies this may be true in mammals. (journals.plos.org)
There are other areas of our well being that hearing loss can affect. Many people with hearing loss are isolated, depressed, lack socialization and connections, and all of these can affect our homeostasis. As some of this research implies, the ear is not an isolated part of our being.
Finally, to get back to the beginning of this article which references jokes about the ears being the first thing to go, countless studies by health professional such as gerontologists, hospice workers and others will tell you at the end of life, hearing is the last sense to go.
“Most people with a terminal illness become unconscious in the last few hours or even days before death. But that doesn’t necessarily mean they don’t know you are there. Many palliative care and hospice professionals will tell you that hearing is often the last sense to go at the end of life. ” (m.webmd.com)
Well after your loved one can no longer speak, he or she can still hear you say, “I love you.” (m.webmd.com) I think that’s pretty amazing.
Meet Melanie Riordan, a woman with quite a story to tell!
In 2004, Melanie discovered that she had a brain tumor and her whole world came crashing down on her. All the “what ifs” ran through her mind. Suddenly, she felt it necessary to determine what she would do if her life came to a crashing halt.
She was in a relationship with a good man. The thought of dragging him into her crisis led her to confront him and end the relationship. He refused to let her go. He said he was in the relationship for the long haul, and besides he loved her. Not only did Melanie survive, but she thrived.
Melanie’s hearing was affected by the brain tumor, and she received a BAHA implantable device by Cochlear Corporation www.cochlear.com two years ago. She also enlisted the help of Canine Companions for Independence, www.cci.org, and received her first dog, Noah. Noah passed away in 2016, and Melanie received a second service dog named Bartram in 2016 as well. Both Noah and Bartram were always acutely attuned to Melanie and her environment. Noah, who was with her since 2004, always sensed the onset of a migraine headache related to her brain tumor. During one period, Bartram constantly nudged her to go outside the house, and he would even sit in front of the door so she wouldn’t be able to get back in. Shortly thereafter, it was discovered there was a slow gas leak in the house.
What follows is a question and answer session regarding her experience with dogs for the deaf. Even if you are not considering getting a service dog, this is an amazing tale.
As a recipient of a CCI Service Hearing Dog, can you tell us approximately how many commands the dogs are capable of responding to?
There are about 25 BASIC CCI dog commands that all CCI dogs know. Then depending upon the placement during/after advanced training will determine how many commands the CCI dog will respond to depending upon job role for the CCI dog.Some basic commands are as follows:
Bed: dog lies down on target
Car: dog loads into car
Here: dog returns to you
Down: dog lies down
Hurry: dog toilets
Jump: dog places whole body on top of object
Kennel: Dog will go into kennel
Let’s go: Dog moves forward with you
No/Don’t: Verbal correction to your dog
Off: dog will return all 4 paws to ground
Ok: dog is permitted to eat or drink
Quiet: dog stops barking
Release: dog is permitted to take break while performing (like to say hello to someone)
Shake: dog will extend paw towards person
Sit: dog places rear end on ground
Wait: dog will not move forward until you give command “here”
Some Alerting Sounds May Be As Follows:
Timer on Microwave
Beeper on Stove/Oven
Go get “name:”
With CCI hearing dogs you can use ASL as well. You must make sure you have eye contact when giving hand gestures to a CCI hearing dog.
As time goes on, you can add an unlimited number of commands.
Notable, CCI hearing dogs are the only dogs that are trained on escalators. This is good to know because many persons with hearing loss have balance issues. Also, the dog can help the recipient tell which direction a sound is coming from.
The CCI website describes a two-week training period for the recipient. Can you tell us what happens during those two weeks?
Classes run from Monday through Friday from about 9:00am to 4:30 pm. Saturday and Sunday are usually free days. The first day covers introductions, campus information, tour and expectations.
Classes are offered in both voice and ASL. If you don’t require ASL your chances of getting into a class sooner is sometimes possible. The wait list for training is two months to two years. CCI tries to match a recipient with an appropriate dog. Once in awhile a potential recipient is not considered an appropriate candidate. Essentially, participation does not guarantee the participant will be awarded a canine companion.
During the two-week training period the participant will have an opportunity to work with different dogs to see which one works best for him. Towards the end of the first week, he will be assigned a dog that will stay in the room with him. Each day there will be lectures, the recipient will be given a handbook and quizzes are given at the end of the day. There are practice field trips to get the potential recipient used to being out with the dog.
CCI provides free housing for recipients during the two week training. All campuses and rooms are handicap accessible, there is free WiFi and TV in every room and there is a central meeting room with a TV, — and there are washers and dryers. There is a gated patio area as well. They provide lunch, but you are responsible for breakfast and dinner and airfare to the site. They have campuses in both Santa Rosa, CA and Orlando, FL. There are kitchens provided if you prefer cooking to eating out. Each dorm has a dorm keeper that will be available to you by email/phone/text if needed. This person will be one of your first contacts when you arrive.
After a final exam, there is a graduation ceremony that will touch your heart. Here is a link.
You will be given the contact information of your puppy raiser with the option for you to contact them. Remember, the puppy raiser was with the puppy for 8 weeks and cared for them completely. You will also be given the contact information of the instructor and assistant if needed.
In addition, CCI will be available to the recipient for the life of your puppy. They will follow up with you to ensure the dog is receiving good healthcare and is generally well cared for. For instance, CCI is very strict on weight. If they feel a dog is being neglected they will take him back. Remember, CCI owns the dogs.
How do I connect to other CCI recipients?
Facebook and Yahoo groups are great connections to the CCI community. Once you graduate you can join the various support groups on Facebook. They have specific groups just for CCI hearing dogs and other service teams. They all share information, support, pictures, progress and help each other out no matter how far apart we may be.
The website states the average service life of a dog is 8 years. When the dog becomes “retired” is he or she returned to CCI or does the recipient keep him until his death?
If you feel your CCI dog can continue to work after 8 years then you can continue to be a team. My first service dog worked for 12 years. I retired Noah when I applied for my successor CCI dog. The option at retirement is that you can keep the dog as your family pet now or CCI will take back the dog and usually the puppy raiser will get first choice to keep or live with those that CCI has on a waiting list for a released service dog. Of course Noah, my first CCI hearing dog lived with us until he was ready to cross the rainbow bridge. He truly was an amazing dog. He passed away June 2016. He is missed every day!
CCI is always informed even after retirement of the dog’s passing and any issues as they keep all medical records up to date on all liters.
If a recipient is no longer able care for the dog due to illness or death, does CCI assume care?
If for any reason that the recipient can no longer care for the CCI dog then CCI will take back the dog. Depending upon the situation and timeframe the dog could either be placed back into training for another recipient or given back to the puppy raiser or someone on the waiting list for a released CCI dog.
You will sign a contract agreement with CCI on your last day stating all this.
Regarding healthcare and personal care of your dog, what might a recipient want to know?
You are entitled and allowed by law to write off on his or her taxes anything related to the service dog as part of YOUR medical care. So all vet visits, pet insurance, food, toys, dog beds, medicine grooming, etc. are covered. Even the trip to CCI including airfare/car rental are covered. If you decide to put up a fence, you can write that off as well. It is recommended the recipient get a good accountant and keep all receipts.
If you purchase pet insurance, there is usually a discount for service dogs.
What are some of the activities recipients and their dogs can enjoy to network, get involved and further spread the word about this wonderful organization?
CCI has various presentations that you can attend. Various seminars are held throughout the year that you can attend at your closest region or any region you wish. NJ and NY just recently had a “DogFest” that raised money for CCI. In NY it was held at the Medford Campus and in NJ it was held at the Edison Roosevelt Park.
CCI holds campus seminars that you are free to attend during various times and at any location. Instructors will be there if more help or reinforcements are needed. You can always reach out to CCI and if more additional help is needed they will work with you to make certain that you are always working towards a successful service team.
Is there anything else you feel is important to know before considering taking on the responsibility of a service dog?
Some may say wow! Two weeks of my time… Well it may sound like a lot to you but in reality it really isn’t enough time. You have to remember CCI dogs are learning from day one to be service dogs. For about 2 or 3 years they are being trained for their special roles. You then only get 2 weeks (really 9 days) to make that connection. Classes are intense and long even with breaks. Prepare yourself to the lead up time. Get enough sleep and rest while in training class. Don’t over do it a few days before you leave for team training as you feel it during team training. If there are time zone changes try to arrive a day earlier if available at the dorms to get settled in.
With that said, — be prepared to probably have the BEST thing that has ever happened to you ever when you get teamed with your CCI hearing dog. Your world will forever be changed! Who in the world would think that four paws and floppy ears would be your new lifeline to the hearing world. Can’t even describe the tremendous feeling that will fill your heart!
And oh yeah, be prepared for what I call the “magical fibers” of doggie hair that will soon become part of your home and daily wardrobe! Embrace it!!!
Thank you for being with us today Melanie and Bartram.
If you will be in Southern Westchester on Saturday, November 5, come meet Melanie and Bartram. Melanie will be a guest speaker for the Hearing Loss Association of America, Westchester Chapter www.hlaawestchester.org, Mercy College, Lecture Hall, 555 Broadway, Dobbs Ferry, NY. The meeting begins at 1:00 pm.
For those of you who already have a dog for the deaf, please feel free to share your experience with us by replying below.
A couple of weeks ago, my neighbor “Margo” passed away. Margo was in her nineties, had a successful career in the corporate world, independently survived her husband by three decades and was still driving just a few months ago.
“She couldn’t hear, she was losing her vision and she was getting grumpy” was all a neighbor had to say about her when hearing of the news.
Was this Margo’s legacy after living in this complex for over five decades? I knew her only surviving relative was a nephew who often sent her flowers. She had outlived all of her relatives in her age group.
I walked past her apartment door and approached the elevator as men filled boxes with knick knacks and other mementos that probably only had value to her. Atop the boxes of random items was an opened box of cornflakes. What was her story? Did the contents of those boxes tell a story about her life?
What I remember most about Margo was that she was friendly. She remembered random facts about neighbors. For instance, for five years, my mother was in a nursing home before she passed away. Margo always remembered to ask me how she was doing. She even went out and bought her a pretty sweater to wear in the nursing home. Also, Margo had a relative who had been a professional opera singer, and she knew I like opera, so she would generate a conversation about our mutual love for the topic. Word got out that sometimes in the afternoon Margo would get on the elevator and ride up and down and just greet neighbors getting their mail or returning from work. But she was never imposing. People liked her. In the winter, neighbors would shovel out her car without her even asking for help. Randomly, neighbors would ask her if she needed anything from the store or check to see if she was alright. Even the superintendent and porters were aware she may need a little extra help during an emergency.
Why did Margo’s passing make me ask so many questions? Fifteen years ago this month, I was widowed after a marriage of 32 years. I did not realize how much I relied on my husband to help me with phone conversations, to hear the doorbell or even to ensure I woke up in the morning. Suddenly being on my own, I developed a strong admiration for women, all women, but especially women with hearing loss who rely on technology and others to ensure they are safe and tending to business in a timely way.
Today, more than ever, there are many women on their own of all ages who are single, divorced or widowed. Often, these women do not live with friends or relatives. Apartment buildings are filled with women on their own, especially older women who may begin to experience their own decline. One of the most common disabilities is hearing loss.
What are some of the things women on their own with hearing loss can do to protect themselves?
Make sure your complex has the name of next of kin or friends who will initiate action if something happens to you. Make sure they have updated information including your doctor’s name and medicine you may take.
If there is an emergency in your complex such as a fire, management may need to take extra measures to inform you and be sure you are safe. Make sure they are informed ahead of time of your special needs.
If you are taken to a hospital, make sure you have an advocate who will ensure you are hearing and understanding questions and directives. Also, every hospital has a patient advocate if you need someone to help you. All too often, people with hearing loss bluff and are too embarrassed to say they missed instructions.
Make sure you have smoke detectors, fire alarms and carbon monoxide monitors.Many people with hearing loss do not hear at night when their hearing devices are off. There are flashing devices and devices that vibrate to alert the person. Many people do not know this, but many fire departments around the country supply these devices free of charge to persons with hearing loss.
Make sure at night, all hallways are well lit, throw rugs are securely in place, wires are not in a place that will make you trip. You will rely on your eyes to compensate for what your ears don’t hear.
Consider getting a service dog. This is a big responsibility, but it may supply you with security and companionship.
This one is just one of my own. At night after turning off the lights, I keep the blinds slightly open. Although I am on an upper floor, if an ambulance or a fire truck pull up in front of the complex, I will see the strobe light reflect on my ceiling. You may have your own little pointers such as where to position mirrors.
What have I learned from Margo?
When I moved to this complex seven years ago, I was experiencing one of the largest declines in my hearing. I met so many neighbors at the pool, the gym or in the elevator who introduced themselves. I was too embarrassed to admit I did not get their names. Margo talked to everyone. Although she missed chunks of conversation, she was never afraid to ask questions.
Margo did not let her hearing loss isolate her. She did her best to keep knowing everyone. Keeping connected is so important, especially as we get older.
Margo stayed active for as long as she could in her church, clubs and social settings. She got her hair done once a week until the very end.
Margo did not let anyone define her.
So when someone tried to define Margo by her failing hearing and eyesight or a bad day, I have to say he just didn’t know Margo. If there is one thing those of us with disabilities learn as time goes on, it’s that if we don’t let these things destroy us or define us, we will come out ahead more resilient. And Margo was one tough chick.
It’s been barely a week since Super Bowl 50. The Deaf/deaf community eagerly anticipated the event with Lady Gaga clutching her heart and singing beautifully while Marlee Matlin performed the American Sign Language (ASL) version of the U.S. National Anthem expressively. The only problem was that although those in the stadium could see Marlee Matlin signing on the monitor, she was not viewable for those watching the game at home except for a momentary flash.
Many in the Deaf community interpreted this as a sign of disrespect. Even though Marlee Matlin wasn’t visible to home viewers, the program was captioned. But social media is filled with comments from people who felt showing her on the monitor to home viewers was about so much more than accessibility.
Marlee Matlin was the first person from the Deaf community to ever win an Academy Award. I don’t think it is unfair to say many people in the mainstreamed hearing community have little relatable experience with persons who rely on ASL to communicate. The first thing people will tell you is they remember her amazing performance in “Children Of A Lesser God.” So she often symbolizes what others perceive as a relatable example of a Deaf person.
If you look at every minority in the United States, persons with disabilities is the last frontier to be acknowledged. In this presidential election year, candidates are vying for the support of women, people of color, gays and the Latino population, but who is even talking about being the candidate for persons with disabilities? The Deaf are often invisible along with others with what we know as persons with disabilities.
Marlee Matlin’s presence at Super Bowl 50 is a reminder that people in the Deaf community exist. They watch football. They care if they are acknowledged as a valid member of our society with a right to a life of dignity. So showing her face signing to people across the country and around the world says yes, we do exist! We are here watching the game with you!
Aside from being an actor, Marlee Matlin has shown the world she is very human. She has acknowledged her need to check into the Betty Ford clinic for substance abuse. She has implied she was abused physically in a relationship and she implied she was sexually abused as a child.
If you look at the clips from her acceptance speech for her Academy Award, she was at 21 years old the youngest to ever receive the award. To me, over the years she has developed into a more confident woman who appears very comfortable in her own skin, and part of her beauty is her expressiveness in signing.
“The opportunity to communicate in sign language, one of the most beautiful languages in the world, is an advantage that deaf people enjoy. It’s a language that combines several elements at once with a simple hand movement and facial expression: meaning, affect, time and duration. It’s just so beautiful that printed or spoken words can’t begin to describe it.”
She is the author of several books including her 2009 memoir entitled “I’ll Scream Later” which is named after her response to learning she received an Academy Award while recuperating in the Betty Ford Center.