Today only, for kids of all ages, the Kindle version of my book The Legend of Eddie the Whale is completely free on Amazon. No strings attached! If you feel so inclined, reviews are always welcome. Either way, enjoy the book!
Want a free coloring book to take along on vacation? Follow the attached link and you can download coloring pages from The Legend of Eddie the Whale. You will be given an opportunity to join my mailing list and receive occasional updates on blog articles and new books.
For those of you who are Deaf/deaf, I am proud to show examples of persons who are culturally deaf or enjoy the benefits of a cochlear implant in my book. I have also included an example of a person in a wheelchair on the beach and other diverse populations that have made our experience as Americans so rich.
Bala, mala, whala! You’ll understand after you read the book! 🙂
On a sunny August day, a young boy gets a chance to ride through the ocean on the back of a wise old whale. As told by a local, Louie assumes his journey from his home in New York City to a beach community is just part of an ordinary day. It is only when he learns the secret of bala, mala, whala that he realizes how important it is for us to join hands and celebrate the diversity and richness of our human existence with compassion and love.
I am pleased to announce that my very first children’s book, The Legend of Eddie the Whale has now launched! This has been a very exciting week for me with my very first school visit to my grandson’s kindergarten class on lauch day.
While my book is not specifically about any group, it is important for me to show positive examples of diversity in my books. Examples that allow the reader to SEE that we are ALL part of the mainstream and not invisible in literature. It’s about the story, not the difference. We are here. The person first before the identifying factors.
My book includes an example of a man who is homeless.A man with a cochlear implant. A woman in a beach wheelchair. Culturally Deaf individuals using ASL. People of color sharing in a common experience. Positive examples of an aging population. Pictures of diverse populations. Just showing that we all exist rather than making any population invisible—that is what inclusion is all about. Kids need to see themselves and the people they love in books.
The Legend of Eddie the Whale, now available on Amazon by using the following link:
Mary Grace Whalen is a freelance writer, former adjunct professor and a happy grandma. Her favorite things are family, the ocean, painting, Asian cuisine, being around nature, chocolate, warm puppies and of course whale watching. She was a contributing author for the book, Journeys With Grief, A Collection of Articles about Love, Life and Loss published by the Hospice Foundation of America. Her memoir, Living in the Color Magenta, is expected to be available in late 2019. In the meantime, she is working on another children’s book.
Growing up in the 1950s, there were a lot of topics people just didn’t talk about. One such topic was disabilities. Often, we were told not to stare at individuals with differences because it was impolite. People just didn’t talk about being differently abled back then. Today, there are more open discussions, and there are some books on the market for school-aged children on a variety of topics involving disabilities. Why did it take so long?
Beverly Cleary is quoted as having said, “If you don’t see the book you want on the shelves, write it.” (ibtimes.com) A celebrated author with many awards including a Newbery, Ms. Cleary grew up on a farm in a town that didn’t even have a library. Yet, she was determined to tell the stories she felt worthy of sharing. This 103 year old author’s books have sold over 91 million copies.
Toni Morrison once tweeted the following, ” “If there’s a book you want to read, but it hasn’t been written yet, then you must write it.” She won a Pulitzer prize for her book Beloved, and she and her now deceased son Slade wrote several children’s books. She is a recipient of the President’s Medal of Freedom along with many other honors. Having grown up in a steel town, her family didn’t even own a televison until she was grown. She knew she had stories that must be told.
Children need to see themselves in stories.
Also, these stories need to be told to help children in the mainstream understand the world of a child with special needs.
Here are some ways these stories in children’s literature can help both the child with the disability and his or her classmates:
Show examples of specific disabilities for classmates to observe
Show examples of specific disabilities so children with special needs feel represented
Foster a better understanding of differences
Open discussions after reading these stories to help classmates understand how they can communicate and interact optimally with a child with a disability
Initiate discussions about bullying
Help classmates become more sensitive to challenges
When I taught college-level English and MLA Research, I always used diversity as a theme for my classes. So it would seem natural that when I decided to write a children’s book it would include include persons with disabilities.
I am happy to announce that my book entitled The Legend of Eddie the Whale is expected to go live on www.amazon.com later this month. I will keep you posted.
My book includes examples of a sax player with a cochlear implant, a mother and daughter telling each other “I Love You” in American Sign Language, a homeless man as well as other examples of diversity.
So the connection to these quotes by Beverly Cleary and Toni Morrison is that I am hoping to continue the trend and to write stories about disabilities and other forms of diversity because there are many stories that still need to be told.
Let’s keep moving forward. These stories are long overdue.
First and foremost, I want to thank all my loyal subscribers for continuing to subscribe to my blog! There are are a lot of good things in the works, and I’d like to share them with you.
As you can see, I’ve enlisted the help of the talented Tina Wijesiri to do a little artwork for my social media pages, and I feel her input gives my blog a look that pops. Her artwork adds a bit of humor to my title. I couldn’t resist asking her to include those pizzas!
My blog will continue to tell stories related to hearing loss. But since we are multi-faceted creatures, there are many sides to our identity. In addition to addressing hearing loss, my future blogs will include topics of interest to baby boomers and an aging population. There will be more articles on diversity as well. Speaking of diversity, my books are really taking form!
My children’s book The Legend of Eddie the Whale will be ready for summer 2019! I have been busy working with a very talented artist who is skillful in capturing images that portray the characters and the story. My book is about diversity, kindness and life’s lessons in a simple format. It will be available on www.amazon.com around the end of June or early July. I will keep you posted on this.
Also in the works is my book Living in the Color Magenta. This book is a memoir styled with individual stories about my hearing loss journey, growing older, growing up Italian overcoming obstacles and celebrating our later years. My purpose is to hopefully inspire and perhaps offer the reader a little humor along the way.
The Greek philosopher Heraclitus stated, “Change is the only constant in life.” According to a U.S. Census Bureau report, Americans move about eleven times in his or her lifetime. That means we must brace ourselves to adapt to a new environment over and over again in a typical lifespan. Before considering a move, a person with hearing loss might want to consider how the change will affect his or her life.
Here are some things to consider:
Medical Resources: If you live in or near a major city, chances are you will have a lot of medical resources. This one is particularly important to me because I like to select, not settle. When you do choose a hearing health provider, you also want to be sure they are part of your medical coverage and have the experience and qualities you seek.
How far must you travel to get to your preferred audiologist or cochlear implant center? Is public transportation easily accessible if your car breaks down? Need new tubing for your hearing aid? Your hearing device is malfunctioning? We have all been there. While strides have been made in remote patient/clinic solutions for newer devices, at least for now, we must visit our hearing center from time to time, and if we can’t hear, we want to fix it fast!
Mobility: Some individuals with hearing loss also have mobility issues. If you have mobility issues, have you considered the multiple steps in your path to get to your new clinic? This goes beyond required accommodations. If a person in a wheelchair has just one hurdle, it can add time to their trip and maybe even make it a tremendous challenge. Persons with balance issues, canes or wheelchairs don’t want to worry about their path being inaccessible.
Connections: Are there hearing loss support groups within a reasonable distance to your new home? Are there clubs or volunteer groups close by? Persons with hearing loss have to be mindful of not becoming isolated. The consequences can be depression and even cognitive decline. The connections and wealth of information are worth your time.
Entertainment: Have the members of your community ensured hearing accessibility through their efforts? I attend art classes at our local library, and thanks to the Westchester Chapter of the Hearing Loss Association of America (www.hearingloss.org), the room is looped. I can hear announcements and participate like everyone else. Likewise, the New York City Chapter of this organization has done tremendous advocacy work in ensuring theatres, museums, subway stations, and even taxis are looped or provide captions. Organizations such as (TDF.org) have captioned performances and there is also the gala pro app for captioned Broadway shows. Living so close to a major city is a real plus.
Deaf Culture: Even if you may not be culturally Deaf, it is always fun to explore another culture. I find diversity fascinating, and we learn a lot about ourselves and others in coming together in this way. I attend American Sign Language chats even though my skills are limited. It’s a beautiful language with a rich history. Performances by the New York Deaf Theatre (www.newyorkdeaftheatre.com) is truly a treat.
What are some things you look for in a hearing-friendly community?
According to the National Institue on Deafness and Other Communication Disorders (nidcd.nih.gov), the definition of American Sign Language is as follows:
American Sign Language (ASL) is a complete, complex language that employs signs made by moving the hands combined with facial expressions and postures of the body. It is the primary language of many North Americans who are deaf and is one of several communication options used by people who are deaf or hard-of-hearing.
Okay, but can we extend the benefits of ASL beyond that definition?
The other day while lunching with a friend, we were discussing the content of my blog articles. Both of us are bilateral cochlear implant recipients. During the discussion, she told me that she felt I often tell the positive stories about cochlear implantation, but I don’t mention the struggles. I appreciated her comments and perspective.
When we take our cochlear implants off, we are still deaf. That means for at least part of the day or night, we live in the world of the deaf. Our lives still go on during these times of silence. Is it a good idea to have an alternate form of communication for us to rely on during these times to communicate with family or even a first responder? Is it logical to consider this would improve the quality of our lives?
Among the top three brands, Cochlear Corporation (www.cochlear.com), MED-EL (medel.com) and Advanced Bionics (www.advancedbionics.com), there is a very high success rate. Each company offers state-of-the-art solutions for their recipients. For many, it is a life-changing solution.
Yet, there are often circumstances where some of us struggle. For me it is in noise. My lunch friend mentioned she often needs to face people. For some others, it is hearing on the telephone, or even enjoying music. The biggest plus of a cochlear implant is hearing spoken language. It is what connects us to the human race. It allows us to attend performances, receive directions and vital updates on what is happening at home and around the world. Those of us who choose to get a cochlear implant do so because we want to hear voices and sounds that alert us.
Perhaps three decades ago, many hearing-aid users were resistant to learning American Sign Language. There was a much deeper divide between the late-deafened community and the Deaf, often referred to as the Deaf/deaf. Today, that has changed. More late-deafened individual are actively seeking resources and sites that will help them attain a decent competency in American Sign Language (ASL) which can be a tool in achieving successful communication strategies.
There are also benefits to everyone in our society knowing at least some basic signs. Here are just a few:
Communicating with stroke victims who cannot speak
Babies who cannot yet speak use baby signs communicate with a parent
Health professionals would be able to communicate with persons who are deaf
Emergency personnel would recognize and respond to a person in distress who cannot speak
ASL would help young children to understand about differences and living in another mode in our society– and the need for inclusion
It would offer people a way to communicate in a “quiet” zone
There are many free online sites that have free ASL lessons and courses. One great site I have visted is www.lifeprint.com. There is also a wealth of information and videos on www.youtube. If you visit Gallaudet’s ASL Connect site (www.gallaudet.edu), there is information on free introductory videos. Gallaudet also has a summer residency program.
American Sign Language is a beautiful and expressive language. With companies like Starbuck’s (www.starbucks) offering ASL as a mode of communication available for persons who are deaf and hard of hearing at some sites, they are setting an example for all of us. The message is, persons who are deaf are consumers. We need more of this type of thinking in our society, and among Deaf/deaf advocates.
Do you think a knowledge of ASL would improve the quality of life for many Americans?
I’ve always been lucky to have family and friends that are supportive of my hearing loss, but I’ve never taken that for granted. As a matter of fact, every time they show sensitivity to my hearing loss in ways that ensure I am included in an activity or celebration, I remind myself that not everyone is so fortunate.
For instance, on Thanksgiving Day like most people, we gathered around a huge table catching up and enjoying one another’s company. Seated next to my five-year-old grandson, we chatted while he played word games. We eagerly awaited for our all the delectables to be served in an eatery on the scenic Hudson River. My grandson has always been keenly aware of my hearing loss, and often he eagerly looks for the tiny wireless microphone I carry that helps provide hearing assistance during family gatherings.
I always bring a wireless microphone with me on these occasions, and it lay on the table next to me. Then a family member raised his glass in a gesture signaling he wished to make a Thanksgiving toast. My grandson quickly dropped his pencil and reached across the table, handing my microphone to the speaker, ensuring I wouldn’t miss a word. Then, the microphone was passed around the large table as everyone expressed words of gratitude and love. How lucky am I to have family that is so acutely aware of my presence at these times?
So I asked myself, what is my part in all this? How can I ensure I can communicate optimally in every possible way whether it’s time with family, speaking to a clerk in a store or ordering food in a restaurant?
CHANGE YOUR FILTERS When was the last time you had your hearing aid or cochlear implant filters changed? This can make a huge difference.
WHEN WAS THE LAST TIME YOU VISITED YOUR AUDIOLOGIST? For cochlear implant users, frequent mappings are a must. For hearing aid users, it’s essential to keep up with any changes in your hearing. Many people experience a progressive loss, and often eventually have a bilateral loss.
LEARN THE PROGRAMS ON YOUR HEARING DEVICE – Today more than ever, persons with hearing loss have multiple programs custom-tailored for individual conversations, music or entertainment, conferences, and noisy situations. Using a remote control, the user can quickly change programs as he or she transitions from one setting to another.
KEEP UP WITH CHANGES IN HEARING TECHNOLOGY- I am amazed when I look back at how much hearing aids, and cochlear implants have changed and improved over the last 15 or so years. For instance, assistive devices coupled with hearing instruments have allowed me to listen to TV shows, hear on my cell phone and music is beyond amazing.
SPEAK UP- If you are struggling to hear, tell the speaker precisely what you need for them to do to help you. Do they need to speak more slowly? Raise their voice to a certain level? If possible, can you move the conversation to a more quiet spot? Do you need written instructions in a healthcare or other setting?
EDUCATE PEOPLE – When I am struggling to hear in a situation, I often tell people I am deaf but hear with cochlear implants. Many people do not even know what they are. Often, when I am carrying a microphone, people will ask me if I am taping their conversation or if I am a reporter. These situations often give us an opportunity to educate people about this often very invisible disability.
LISTEN, LISTEN, LISTEN – Almost every person I’ve ever asked tells me they take out their hearing instruments when they return home. True, hearing is exhausting, but it seems maybe after taking a “break” for a bit, put them back in. Not only is it not fair to the family, but studies indicate using the ear/brain connection keeps the ear and brain stimulated.
ACCEPT THE NEW YOU – For most of us, hearing loss is progressive. Over my lifetime, the hearing loss I had 40 years ago was so different from my experience at this moment, being totally deaf when my cochlear implants are off. There is a point when we admit to ourselves we have crossed a threshold. It took me a long time to come to terms with how my life changed.
IT’S OKAY TO GRIEVE THIS PROFOUND LOSS – Yes, we grieve the loss of one of our senses that connects us to the universe. When we mourn, we acknowledge the reality of it all. But we are so fortunate to be living in a time that offers so many solutions. Embrace those solutions.
DON’T COMPARE YOURSELF TO OTHERS WITH HEARING LOSS – Some people have a mild loss, others have a profound one. Some hear great in crowds, others avoid these situations because they are a struggle. Some can listen to music, others cannot. Due to the nature of my hearing loss, doctors weren’t even sure a cochlear implant would work for me. So I’m gratefully for whatever sounds I hear.
BE SENSITIVE TO OTHERS WITH HEARING LOSS – It’s not a contest. Be compassionate. Sometimes our friends with hearing loss need for us to repeat or rephrase. Sometimes friends with hearing loss struggle with speech. There can be frustrations unless friends with hearing loss stop to remember they are not the only one in the room struggling or feeling frustrated.
KEEP TRYING – You may feel a new situation may be a struggle but is it your own way of thinking that is keeping you back? For instance, for a long time, I avoided joining a writer’s group. My thought was that I would have trouble around the conference table with back and forth conversation and when writers read their work for critique. All I had to do was ask, and the entire group happily passed around my microphone. It would have been a big mistake not to give this a chance.
It can take many years of hard work to assert one’s needs. It can take many more to realize all the ways we can be part of the equation and be proactive. But when we do, the world becomes a more vibrant and colorful place.
Although it is difficult to find a reliable and up-to-date figure representing the number of people who enjoy the benefits of cochlear implantation around the world at this time, Cochlear Corporation alone claims 550,000 recipients and growing. Those numbers do not include the other two major brands, but it is apparent cochlear implantation numbers are on the rise.
Thirty years ago, many people who were active with advocacy groups for the deaf and hard of hearing were hearing aid users. Many of us were just learning about cochlear implants. The requirements for cochlear implantation were more rigid. The devices were not equal to the sophistication of the devices we see today. Many of those who were hearing aid users are now cochlear implant users. Although many culturally deaf individuals still remain opposed to cochlear implantation, some have decided to be implanted. However, I respect the right for each individual to make the decision that works best for them.
Often, I have heard people ask other recipients, so now am I a hearing person, hard of hearing or deaf? The thing about cochlear implantation is that although with traditional processors the recipient can often hear very well when they are on, when they are removed they are still deaf. While I would agree what we call ourselves is irrelevant, this is the part that is hard to explain to the person behind you in the grocery store who strikes up a conversation about the devices. Pretty amazing is the response I often get.
There has been a lot written about the Deaf/deaf and identity. Those who were pre-lingually deaf often identify with the capital D because it indicates they are part of deaf culture. Those who grew up with a mild to severe hearing loss often identify themselves as either hard of hearing or late-deafened. Three decades ago, I wrote an article for the publication Silent News called “Between Two Cultures.” The focus of the article at the time was how persons who are late-deafened are not part of deaf culture, yet, they struggle to stay mainstreamed in a hearing world. A lot has changed for persons with hearing loss.
Since then, the Deaf/deaf have been able to reap the benefits of assistive devices and advanced technology and cochlear implants are more widespread in both groups. As a recipient of a cochlear implant many of us have been able to stay mainstreamed. We can communicate with our friends and family, attend theater, talk on the phone, listen to music and live life in real time.
Yet, many will tell you they are very happy they have the option to remove their implants and not hear the person next to them snoring at night, or that jack hammer outside their window. Pretty amazing to be a cyborg, huh?
Are CI users part of an emerging culture? Is it in a formative stage? Feel free to share your thoughts.
Back in 1989, I became involved with the Westchester Chapter of the Hearing Loss Association of America (www.hearingloss.org). I remember my first meeting. It was then that I discovered that there was life beyond my old analog hearing aids. Soon, I became familiar with Assistive Listening Devices (ALDs) and flashing devices.
New technology has given all of us an opportunity to function better and live fuller lives. Over the years, the technology has only gotten better.
Early Devices: Pocketalker, TTY/TDDs and Closed Captioning Devices
My first joy was in trying out the Pocketalker device. If you aren’t familiar with Pocketalker, it is a small device the size of a pack of cards with a microphone and a cord of varying sizes. It can be used for one-on-one conversations, or it can be used extended to clip to a TV or other sound source.
Then there was the day I went to the home of our former chapter president. She was getting a new closed captioning device, and she offered me the one she had been using only suggesting that I make a small donation to our local chapter. The day I brought the device home and hooked it up to my television, my family and I watched words dance across the screen to the sound of high-pitched tiny beeps. The problem with the early devices was the captions were often garbled. Also, many shows were not captioned.
Then there was my first TTY/TDD. I bought this device when my hearing loss became more severe. AMAZING was my first thought! Once again, I could communicate by phone. After that, I got flashing and vibrating devices to alert me to the doorbell, the telephone and to wake me up in the morning. These devices helped me to function and remain part of the workforce.
A lot has changed since those days. Now that I am profoundly deaf and I wear cochlear implants, my needs have changed as well. There will be more on that in a future post. How lucky I feel to be living in a time that has so much to offer persons with varying levels of hearing loss.
Utilizing Cell Phones, Computers, Accessories, and Resources
Perhaps the most pronounced change came with the use of cell phones and computers. Here are some examples of how technology has evolved:
Both hearing aid and cochlear implant users can use Bluetooth-enabled phones to stream cell phone conversations and music directly into their Bluetooth-ready hearing devices. This is of particular value because many recipients are bilateral, and bilateral listening often provides for a richer experience.
Closed-captioning devices are no longer needed for televisions since all televisions 13 inches or larger are now required to have built-in captioning.
There are many captioned landline phones out there that are often free to persons with hearing loss. Companies such as CaptionCall (www.captioncallphone.com) and Captel (www.captel.com) are examples.
Internet newscasts are often captioned just with a click in settings.
Text messages are an option if the caller isn’t comfortable with their level of hearing on the phone.
Cochlear implant companies have developed accessories for persons with hearing loss. Some of these devices include TV devices for better listening, a personal microphone for restaurants and noisy environments and a phone device as mentioned above for conversations and music. You can visit the three major providers at www.cochlear.com, www.Advancedbionics.com, and www.medel.com.
In New York City, Galapro is available for captioning of Broadway shows delivered right to your phone. Check out the application for further details. Aso, don’t forget about www.TDF.org for captioned performances both on and off Broadway.
We are seeing more visual alerting systems in public transportation. Some subway systems such as those in New York offer assistance with loops if you turn on your t-switch. Some cabs provide t-switch amplification.
If I go back to a time when my hearing loss really impacted my life, I think of all that I missed. Decades of movies. Music. Important conversations. Still, I feel pretty lucky. Those who lived long ago never had the opportunity to hear what I got back with digital hearing aids, cochlear implants, and assistive accessories.
Going back in time: Beethoven, Mozart, Helen Keller and Thomas Edison
Think how beautiful it would have been if Beethoven had the opportunity to once again hear the music that brought so much joy to everyone else’s ears. Imagine how much easier it would have been for Thomas Edison to have had an interactive conversation with his friends Henry Ford, Harvey Firestone and John Burroughs. How special would it have been if Helen Keller had been able to have a live chat with her good friend, Mark Twain? I think of this often and feel so much gratitude for living in these extraordinary times that allow me to participate in all the sounds of life. Imagine what tomorrow will bring!
How has the technology for persons with hearing loss affected your life?
Closing Note: Mention of any websites, services or devices are included in this post as a courtesy and are not intended as a statement of endorsement.