Thursday, 18 May 2017

Deaf Awareness Week: Mainly Anecdotal

Here are a few anecdotal pieces I have found which are experiences of those who are deaf, either from birth, or later in life, and their parents.

They offer a brief window into another world, a glimpse of what it is like to have difficulty hearing, or not hear at all, to lose one’s hearing and the connections with the outside world, and the difficulty that parents can face.

Jack Spear, Ph.D., author of "Neither-Nor: A Young Australian's Experience with Deafness," is a member of AG Bell and has a hearing loss. Professionally, Dr. Spear is a psychologist and consultant to the Wisconsin Disability Determination Bureau.

The loss of hearing can also mean the loss of the easy and casual learning, information gathering and social contact afforded by the gleeful exclamation of the childhood peer on the playground, the sarcastic undertone of the classroom bully or the quickly whispered enticement of the potential sweetheart. Rarely is a single such experience critical in the development of an individual's identity; rather, it is the sum of hundreds of such experiences over many years that are formative. Many of these experiences are considered mundane and taken for granted by hearing individuals, but every deaf individual has frequently said "Aha!" when the common, but ambiguous, situation suddenly becomes clear.

Nicole Iwawaki, author of "Tips for Parents," and her husband, John, are parents to Judah and Cordelia. They live in the San Francisco bay area with their cat, Jose, and often a small flock of hens. Iwawaki's current position is head dishwasher, chauffeur, home school educator, event planner and ring master. Readers can follow her blog at

Part of raising a child with hearing loss is teaching her to self-advocate. Teaching her to say "What did you say?" or "Can you speak louder?" or "I am deaf and I need to see your lips when you speak to me." Self-advocacy prepares Cordelia for the future, for when she enters her teen years and beyond, and for the day when we are no longer there to answer queries about her deafness.

Alana Nichols was born and raised in Taipei, ^ Taiwan. Profoundly deaf in both ears due to a common cavity B malformation, she underwent experimental surgery and received auditory-verbal therapy while growing up. After their experiences with Alana, her parents started the Children's Hearing Foundation in Taiwan, which has since expanded its resources to China and Japan, helping thousands of children with hearing loss. Her mother, Joanna Nichols, was the 2010 recipient of AG Bell's prestigious Volta Award.

If there is one value my parents spent the most effort ingraining in me, it would be learning to advocate for myself. For as long as I can remember, my parents made me responsible for informing teachers, classmates, friends and even strangers about my deafness and taking the necessary actions to compensate for any information I may miss as a result. Naturally this became an incredibly valuable tool in school where I learned to sit in the front, ask the teacher to face the class when teaching, and ask when I did not understand information

Ultimately, I believe many of the life values that being deaf has taught me are critical for people from all walks of life including people with typical hearing. How you view yourself is going to have a big impact on how others view you. The same goes for how you view your hearing loss. I have learned that how others respond to my deafness is often reflected in the example I set through my attitudes and actions. If I view deafness as a difficult obstacle that holds me back, I find that others will also see it as a hindrance.

Carrie Spangler, Educational audiologist with hearing loss speaks about her career, advocacy efforts and life with hearing loss

I experienced a rollercoaster of emotions growing up in a mainstream setting with hearing loss, especially in middle and high school. As with any teenager, I just wanted to fit in and be part of a group. I was already one of the tallest girls in my class, had braces, a horrible perm for my hair.. .add to that the hearing aids and talking funny. I certainly felt like an outsider and had some really "down" moments during this time of my life. As professionals, we talk a lot about the grief cycle that parents go through when they find out that their child has a hearing loss. I found that I went through many components of this grief cycle as a teenager trying to accept my hearing loss as a part of who I was. I was mad at God for making me different and went through some periods of depression.

Hearing aids are my connection to the world, to people and to my family-this inspires me to advocate for the hearing and listening needs of others, especially children who may not have the ability or knowledge to advocate for themselves.

I continuously educate my own children about what it is like to have a hearing loss and what they need to do in order to effectively communicate with mom. I also know that as a parent, I need to be sure that I can meet their needs and communicate effectively

Vivie Moraiti was born in Greece and profoundly deaf, used hearing aids most of her life, and now has unilateral cochlear implant. She was mainstreamed throughout her education, is a breast cancer survivor, and is fluent in Greek and English. In her spare time, she mentors cochlear implant recipients from around the world, plays with her camera and spends most of her summer vacations on a boat.

"I'll tell you later." "It's not important."
"Oh, never mind."

These are phrases that I have often heard, ever since I was little. Now, I hear them less often because when I don't understand something, I simply laugh without knowing why they're laughing or I make a sad face because everyone else does it. I always say that I can't act or lie to save my life, and yet I do it anyway. Since I received my cochlear implant, I still have these "bluffing" moments, but not as often as before. About 90 percent of the time, though, when I ask friends what's happening in a conversation, I'll get the answer: "I'll tell you later." And when, later, I remind them, they'll almost always answer that they "forgot" what it was about. Some, more honest people say it was really NOT that important.

Well, it WAS important to me, even briefly so. If I'm asking, it means that it matters to me, and that I want to understand and participate. The problem is that nobody will cooperate. And then they wonder why I avoid large gatherings, coffee dates and bars, and prefer to have oneon-one meetings or gatherings at home with a relaxed feeling and few people.

At large gatherings, banquets, weddings and baptisms, I simply do not try to follow along. I prefer to kill time with dancing or people-watching. And generally try to leave when it's not rude to do so. I could make a fuss over "I'll tell you later," but I now realize that if the other person does NOT want to include you, it's not worth spending time with him/her.

Dear readers, if you have someone to whom you tell this phrase often, especially if she is deaf or hard of hearing, stop and think for one minute how she will feel when you tell her. Think about how it will sadden her, especially if it's the umpteenth time she has heard it. Turn around and spend five minutes to include and explain. Show her the way and you will make her hour, day, even week. If you absolutely have to tell her this phrase.. ..KEEP your word and tell her! Even if it seems unimportant to you.

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