disability Archives - The Practical Caregiver Guides

I had business to conduct at a government office the other day. When I signed in at the kiosk, I clicked on the button on the electronic screen that identified me as hearing impaired. “Good,” I thought. “I will be able to speak with someone who is familiar with my situation.”

But even after doing that, I faced skepticism from the official with whom I spoke. Our conversation was one I have had hundreds of times before. It went something like this:

“I’m sorry. Can you please repeat that?” I asked politely. “I’m deaf.”

“No. You’re not really…are you?” I watched surprise spread across her earnest face. She just couldn’t believe what I was saying.

“Yes, I really am.”

That didn’t stop her from turning her head away or dropping the volume of her voice again and again. Clearly, she had had little experience with a person who lip-reads speech.

For me, this is a common encounter. I grew up being unable to hear. Despite adults telling me that I just needed to pay more attention to what they were saying to me, I was often clueless in noisy settings. There was too much going on for me to isolate the speech I was trying to understand.

Now a very experienced lip-reader, I often find people doubting my hearing loss. Some deny it. Some think I’m faking it. And some are just confused by it. After all, I don’t “look” deaf.

I’ve had numerous runners assume that I hear their footsteps pounding on the pavement as they come up behind me when I am out walking the dog. Some are polite about startling me. Others not so much. One nearly mowed me down as she blew past me. If I can’t hear you yelling a warning at me, I can’t step aside, can I?

I am always hypervigilant, since I cannot hear danger approaching. I track every sight I can because I never know what is coming my way. That’s because I was once violently attacked and the only thing that saved me from greater harm was the fact that I saw my assailant in the reflective glass as he snuck up on me.

But most people never notice the signs of my hearing loss. They never see how much work it is for a person who is impaired to function in a hearing world. Without my hearing aids, I struggle to follow conversation, especially because my hearing loss is asymmetrical. One ear is more damaged than the other. If you are talking to me on my weak side, you might think I am ignoring you. My peers in school thought I was a snob because I didn’t respond to their overtures. How could I? For every ten words spoken to me, I am lucky to recognize three or four by sound alone at 75 decibels.

I once had a psychologist, who was not actually treating me for anything, confidently announce to me that my hearing loss was the result of a language processing disorder. She decided I had a learning disability and couldn’t wait to explain to me what my REAL problem was. That’s the trouble with a so-called expert making a diagnosis without the facts or proper testing. What she didn’t realize is that when I sleep on my bad ear, not only do I not hear speech, I don’t even hear my super-loud alarm clock positioned barely a foot away from my pillow. I rely on the light on my phone to flash when a call is coming in. And when the kitchen timer goes off, the dog tries to be helpful by woofing. That’s because deaf is deaf. No amount of speech pathology is going to change the fact that I can’t hear sounds that most people hear.

I was twenty one and studying to be an educator, when one of my sage professors recognized the fact that my word recognition skills were so poor. She insisted that I have my hearing tested. My first audiologist was shocked that I had never been diagnosed, given how serious my loss was, but she said that I was so adept at reading lips, I had compensated for it. At the time, the technology we have now was not available, so hearing aids weren’t really an option.

These days, though, hearing aids can be programmed to better accommodate the range of frequencies that are affected by hearing loss. The first time I heard traffic moving on the highway, I was shocked. I had no idea it was so loud. Nor did I know that a flushing toilet or water running in the sink could make so much noise. And when an airplane flew over head when I was out walking, I was shocked by the roar of the engine. Garbage trucks on trash day and the school buses accelerating down the street are cringe-worthy. As for the screech of fingernails on the blackboard, I have no frame of reference for that, but I imagine it must be painful to hear. I am not looking forward to that experience.

Are there disadvantages to lip-reading? Definitely. Men (and even a woman or two) have often presumed I was coming onto them because I watched their mouths so intently during conversations. They thought it was sexy, flattered to think that I paid so much attention to them. All I was really trying to do was follow their speech.

If I am not looking at you, I am probably not hearing you, even with my hearing aids in my ears. Hearing aids do not take the place of healthy hearing. They are not part of a miracle cure that magically transforms my disability into a functional ability. So much depends what I am trying to hear. I don’t always immediately recognize sounds, especially if there is background noise. Then again, if a person yells loud enough to amplify the decibels to my hearing threshold, I can hear every word he or she says.

I can look in the rear-view mirror at a traffic stop and unintentionally eavesdrop on a stranger’s conversation. I can watch TV without the sound on, but only if I can clearly see the speakers on the screen. It doesn’t really matter if the conversation is in American English, British English, or Australian English. Those vowels and consonants are formed similarly, no matter what the nationality of the mouths that utter them.

And the advantages of lip-reading? I can’t tell you how many times I have served as an interpreter for other people. When my mother lost her hearing, I was able to step in and help her communicate with her health care providers and others. I do that now for my father, who has a profound hearing loss.

When I translate for someone else who is hearing-impaired, I always make sure I repeat back to the speaker what I think I have heard, so that I can convey the intent behind the words. I want to be as accurate as I can be because I know people with hearing loss often feel disconnected and disenfranchised from the hearing world. It’s about understanding the context and the gist of the conversation. Are we all on the same page? Have we resolved misinterpretations, misunderstandings, and mistakes?

I like to see things in written form whenever possible, because that way I can be sure I understood. I can see what I might have missed.

Some people think that if I ask for something to be repeated, it’s because I didn’t pay attention to what was originally said. I long ago gave up apologizing for being hearing-impaired. I do double the work that a person with normal hearing does to participate in a conversation. If I ask people to repeat something after I have announced I am deaf, and they still give me a hard time, I will terminate the conversation. That’s because they clearly aren’t interested in my needs.

Hearing loss is the silent disability, the one that most people don’t recognize as a real disability. In today’s world of technology, there are people who still think that any and all hearing loss can be “fixed” digitally. A little tweak here, a little tweak there is all that needed, right? Wrong. Just as you wouldn’t think that a person who navigates a staircase with crutches has good mobility or a blind person with a cane can fully function on a busy street, deaf people can’t simply overcome hearing loss with technology. Compensation is not the same thing as healthy hearing. People with hearing loss need to have their disability accommodated in reasonable ways. We’re not asking for you to fix us. We simply want to be able to function as well as we possibly can in a hearing world.

There once was a woman who had no shoes. She had a fancy car. She had money. She wanted for nothing. But she had no shoes, at least none that have ever been worn.

Beware! She’s loose among us. You will recognize her by her shoes. Her soles are unmarked. There is not a scuff, not a scratch, not a drop of mud, nor a rain drop, nor a single tear upon them.

How can this be, you wonder? I will tell you. It’s because she has no soul. She has never walked a mile in anyone’s shoes, not even her own.

In this day and age of endless rancor and bitter attacks, we have forgotten to be civilized, and as a result, the most vulnerable among us have suffered grievous harm to the heart and emotional distress for the soul. Case in point?

I have a very dear friend who has struggled with cancer, cancer treatment, and a myriad of complications for several years now. She happens to be one of the finest people I know. She’s a teacher, whose wise counsel has shaped many minds. She’s a mentor to children whose lives have been torn apart by circumstances beyond their control. She’s a loving and kind daughter, who cares for parents now challenged with their own health issues. She’s a writer, whose eloquent voice has inspired so many of us. She’s a musician, whose songs have delighted crowds. And now, she’s a human being who deserves to be defended in the face of an unconscionable attack.

She was recently out in public, hoping to have a pleasant time after suffering through more physical pain than any person should have to endure. Slowly making her way from the curb onto the sidewalk, she was assailed by verbal abuse that spewed forth from the mouth of the woman with no shoes.

Just imagine how much energy it required for my friend to put one foot in front of the other as those words stung. Picture the effort she made to move each leg as her heart filled with tears. There she was, minding her own business, determined to get on with the business of living her life. And what did she get for it? A vicious insult so outrageous that I will not even repeat the gist of it, because it was so very wrong. This kind, tender-hearted soul was attacked by a mean, self-absorbed woman with no shoes. For those of us who love her, our frustration with the injustice of it all knows no bounds.

My sweet friend is a woman of many shoes. She is the light in a dark world. Every sole of every shoe she has worn is marked not only by her own experience, but by the depth of her love, compassion, and wisdom. She has a closet filled with these relics of her journey through life, and each pair has a story to tell.

The woman with no shoes has made no mark of her time here on Earth. Tis a poor, loveless creature that has never known the joy of being, an empty soul that has never known the treasure of having real love shone upon her. I have no doubt that love is all around her, but until she puts on a pair of shoes that belong to another human being, she will see and hear nothing.

Every time we learn from the people around us, we are made better by it. Every time we put ourselves aside and we seek to see the world from another’s perspective, we grow in wisdom and compassion. It’s not enough to recognize the differences that separate us. We must take that understanding and make sense of it. Who we are and what we do defines us as human beings. It is our responsibility to make the world a better place, not through tearing it apart, but by shaping it with loving hands.

If the woman with no shoes had taken a single step in any one of my friend’s shoes, she could have been transformed. That’s how powerful and profound my dear friend’s wisdom is. To embrace life with such zeal in the face of overwhelming adversity has created a superhuman spirit that knows no bounds. We need more superheroes in this day of nasty, vile, antisocial interactions.

But to be a superhero, you must walk in many, many shoes. Not just the comfortable ones. Not just the ones that fit, or look good, or attract compliments. You must slip on the ones that pinch to learn about the pain of being narrow-minded and the ones that are too big to understand how much room you have to grow. Your journey begins and ends with you, and how far you are willing to go is something you must decide. When you become tired of the endless bitterness and rancor, put on a new pair of shoes. And as you wear out each subsequent pair, take what you have learned and share the wisdom. That is the power of shoes that have been worn well.