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.
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.
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.