Dealing with Hearing Loss: No Longer Who I Was But Not Yet Who I Will Be – Part 1
Michael A. Harvey, Ph.D.
ALDA Keynote address: Orlando, Florida; 10/23/02
I don’t know much about how to catch monkeys, but I heard the following story. You take a coconut and make a hole in it, just large enough that a monkey can squeeze its hand in. Next, you tie the coconut down, and put a piece of candy inside. The monkey smells the candy, puts its hand into the coconut, grabs the candy and finds that the hole is too small for its fist to get out. The last thing a monkey would consider is to let go of the candy. Often they only let go when they fall asleep or become unconscious because of exhaustion.
I told this story to Jill, a woman who had lost her hearing several years prior. She gave me the same quizzical look that some of you are giving me, and then asked me if I wanted a lifesaver.
I can imagine a group of monkeys sitting together at a seminar entitled “How to avoid being caught by humans.” Their advice might be as follows: that if holding on to the candy causes you to be trapped, for God’s sake let go of it! Ultimately the monkey’s unwillingness to let go of its attachment to the candy is the cause of its suffering.
We all have strong attachments, many of them quite healthy. We may be attached to our partners; to our children, our friends, perhaps to an idea, a God; or to certain clothes, music, jewelry, etc. (The Peanuts character, Linus, as you may recall, had a strong attachment to his blanket). But most of all, we’re firmly attached to our own identity, our perception of who we are.
Even though Jill had been deaf for several years, she was firmly attached to her identity as a hearing person. In essence, her identity was as a hearing person minus her ears. Her childhood had been filled with competitive sports: soccer, basketball, skating, and even football, traditionally a boys sport at her school. Her mother taught her what would become an ingrained mantra: “There’s nothing that you can’t do if you put your mind to it.” In fact, one of Jill’s earliest memories was her mother reciting a bedtime story about a train that almost couldn’t make it up the hill – that is, until it put its mind to it.
But now, no matter how much Jill tried, she couldn’t make her ears work. Hence, she beat herself up mercilessly. She described herself as “a square peg in a round hole” or with pejorative words, such as incomplete, defective, inadequate and broken. And she was barraged with shame.
“I know I’ve got to accept myself!” she sighed. Jill knew that, like a monkey who didn’t let go of the candy, she would suffer if she didn’t let go of her hearing identity and adopt a new, deaf identity.
From a distance it looks so easy!
I’ve been privileged to have worked with many persons with hearing loss who have experienced this process of transformation first hand and who have taught me some of its inner workings. One important principle, it seems to me, is the necessity of letting go of what is familiar (the hearing world) in order to then attach to what will eventually become familiar (the deaf world). But isn’t there a moment in time, or millisecond in time, when one is no longer hearing but not yet deaf? What about the time when “I’m no longer who I was but not yet who I will be”?
There are many other examples of this in-between state in addition to hearing loss:
· Getting married: Before the ceremony we’re single and immediately after saying “I do,” we’re married – a done deal. But for most of us, there’s a period of several months when, although we’re no longer single, we don’t yet feel married.
· Turning 21: Although we’re no longer a child, we don’t yet feel like a real grown-up.
· Moving to a new residence: We no longer belong in our old house, but don’t yet feel like we belong in our new house.
· The death of a loved one: We know he or she is deceased, but for a long while, it doesn’t seem real.
· Divorce: No longer married, but not yet feeling single.
· We don’t have to restrict ourselves to humans. In the case of caterpillars, for example, we know they turn into butterflies at some point in their development. They, if you will, “shift identities.” But think about the point in time when the caterpillar is no longer a caterpillar but is not yet a butterfly.
· This in-between state even happens with Internet Explorer, version 6.0. After leaving one website and before entering a new site, the words “unknown zone” appear on the bottom right of your screen. Have you noticed that?
And this in-between experience is certainly endemic to hearing loss. Social Worker Holly Elliott, who became deaf herself, described her feeling between the hearing and deaf worlds:
“Hearing people often think I am hearing because my speech is good; deaf people often think I am hearing because my signs are bad…we are caught between incomprehensible speech on the one hand and incomprehensible signs on the other. If only those hearies would talk more clearly! If only those deafies would sign more slowly!”
I’ll never forget the first time I had worked with an adolescent who was hard-of-hearing.
“I’m not like deaf or hearing people. I don’t fit in anywhere! You don’t get it, do you?” she complained.
“Help me understand,” I offered.
“I’ve tried but you ignore how I feel.”
“I get that you’re lonely, that you want more friends, that you fight with your parents…”
“You don’t get it!” she interrupted.
We were going around in circles. It was our sixth meeting.
I privately asked myself what adolescent, or adult for that matter, does not feel ignored or misunderstood? Mary had a lot going for her! Good speech; good lip-reading skills. She appeared to be dealing with her hearing loss well. She was bright, excelled in athletics, well-liked and had good social skills. The receptionist referred to her as “that very nice young woman.” I viewed my role as providing supportive therapy in order to help her get through what I judged to be a normal developmental stage of adolescence.
During this time period, my agency began advertising a conference which we emphasized was designed specifically for “Deaf and hard-of-hearing persons.” Minutes before my next meeting with Mary, I received an inquiry from a prominent community leader who had just received our brochure. He asked “How is your conference specifically designed to include hard-of-hearing or deafened persons? What kind of assistive listening devices do you have?”
I was embarrassed to admit that all we had planned for was an American Sign Language interpreter. We had ignored the unique needs of the hard-of-hearing and deafened audience who for the most part were not ASL users. Instead, we focused on the needs of the ASL-fluent, culturally Deaf audience. I thanked him for calling and said I’d get to work on it right away.
And now I was [working with an adolescent named] Mary. Once again she, too, complained that I did not take her needs seriously.
But this time I finally got it.
I asked her to stand with both her arms outstretched and to imagine one side the Deaf world and the other side the hearing world, and to imagine that she was being pulled from both sides.
The pull to the Deaf world: “We both know what it’s like to be outsiders in a hearing world; we both having hearing losses… But I don’t know ASL and I like many things about the hearing world; I think hearing.”
Therefore the pull to the hearing world: “But there’s a glass wall between me and others. I never feel included.”
As she swayed back and forth, back and forth, back and forth, she grimaced. For the first time, she began to cry. “This is how I feel,” she concluded. “Pulled towards the hearing world and pulled towards the Deaf world; but I’m in neither one.” Like Jill, the woman who I told you about at the beginning of my talk, she was no longer hearing but not yet deaf.