Helen Keller Deaf-Blind Awareness Week

Tomorrow marks the 135th anniversary of Helen Keller‘s birth. I remember being fascinated by Helen’s story as a young child, full of wonder at how she managed to learn to communicate although she was deaf and blind. (Thought she was born deaf and blind? Check out the myths.)

More recently, whilst exploring the d/Deaf/HoH world online, both out of interest as a hearing aid user and as “blogger-in-chief” of Open Ears, I came upon postings about Usher Syndrome, a rare progressive disease that affects both sight and hearing. They gave me a touch of the fear one could have about losing sight in addition to hearing, particularly if one uses sign language.

In 1984, President Reagan proclaimed the last week of June “Helen Keller Deaf-Blind Awareness Week” — an occasion to raise awareness about deafblindness and highlight the contributions of those who have this disability. It has since spread to some other anglophone countries.

As my contribution to this awareness week, I’d like to share two videos about young deafblind women with you. Continue reading “Helen Keller Deaf-Blind Awareness Week”

Training and Straining

A few weeks ago I wrote about how I take my ears on and off all the time in my day-to-day life, and Beverly commented something that hit home:

The key to hearing better longer is to keep your auditory nerves and brain active and NOT let them atrophy. Through the use of hearing aids you’ll enjoy a better quality of hearing longer. Put them in and forget about them.

It reminded me of my father’s first time with glasses. Something like twenty years ago, he had to begin to wear glasses; at the normal age when eyes become less flexible and arms need to be longer and longer because you can’t adjust your eyesight the way you did when you were younger.

His first reaction was “Oh wow, it’s better” and then went on to “Actually no, wait now, we have to talk it through again”. Ring any bells?

Continue reading “Training and Straining”

Subtitles: On or Off in a Shared Home?

If you live with someone who doesn’t have hearing loss, is there a tension around having the subtitles on when you watch television together?

When my husband went away on a trip last year and I was home alone, at the first opportunity I got, I switched the subtitles to ‘on’ and had them on all the time. ‘On’ was not their normal default setting in our house at that time, you see. Normally, I would only ask to have them on when I was really struggling to follow the plot of a show.

Of subtitles, someone once said to me, “I don’t know how you can read the text and watch what’s going on at the same time.” When she said this, I was tempted to say, “I don’t know how you can’t.” Continue reading “Subtitles: On or Off in a Shared Home?”

Breaking the Surgery Mindset

For the past ten years, I believed I knew everything there was to know about making difficult decisions. In my mind’s eye, the hardest decision I had ever made was to stop wearing bilateral hearing aids and opt for years of hearing restoration surgery.

After the traumatic experience of being intubated awake, returning to the operating room by choice felt nothing short of insane. Yet, I knew enough to understand that I would not be able to have the life I desired without repairing my eardrums. I was already ambitious as a pre-teen, with a list of lofty dreams including attending a top college, reaching the world with music and writing, learning at least five languages, and seeing as many countries as I possibly could.

All of these goals felt heavily dependent on hearing for their execution. Though I feared surgery more than anything else on the planet, I made the decision to go for it in hopes of having the hearing necessary to make my dreams come true. Continue reading “Breaking the Surgery Mindset”

More Phone Etiquette for the Hearing Challenged and Those that Call Them

Everyone with a hearing challenge has a phone story.

I knew from my very first hearing aid that the phone was going to be a problem. The technology at the time included a phone program that worked if I was in the right location with my head cocked at a 27 degree angle facing east during the new moon. Static was a persistent by-product.

Today, I am one of the growing numbers of people using a cell phone almost exclusively. I also have an adapted and amplified phone with a visual display connected to the Wi-Fi in my home that I have yet to customize to my preferences as I am skeptical about the Wi-Fi reception for reasons I’ll outline later. Continue reading “More Phone Etiquette for the Hearing Challenged and Those that Call Them”

The On-And-Off Relationship

As a relatively new user of hearing aids (three years), and since I’m only mildly hard of hearing (without them, the spoken word is a bit blurry; with them it’s crisp), I don’t feel the need to wear my hearing aids all the time.

Oh, of course at the beginning my audiologist told me to get used to them by putting them on in the morning, not minding them all day long (pretending they’re not there and acting naturally), and taking them off in the evening. Beginners do as they’re told, don’t they? But my days are quite long (6:30 to midnight, I don’t sleep much) and my batteries ran out after 5 to 6 days.

Continue reading “The On-And-Off Relationship”

The Name I Call Myself

Picking a term to describe our hearing is fraught with implications.

The idea behind “hearing impaired” is that we are lesser human beings and must be fixed to function.

Those who suffer (dare I use “suffer”?) from mild to moderate hearing loss do not necessarily identify with the term deaf—a word that is historically loaded and also carries a distinction between capitalized and lowercase “d”. Uppercase “Deaf” reflects a community and a culture of identity, and carries pride similar to that of ethnic and religious groups. Lowercase “deaf” can reflect only severe to profound hearing loss, or hearing loss on the whole, depending who you ask.

Continue reading “The Name I Call Myself”

Talk to Me: Hearing is Not Listening

I’m a talker. Have been since my first words, or so the legend goes. Even as I became part of the “hearing lost” I didn’t stop talking.

According to my audiologist when we lose hearing we have two choices, really — to recede and/or to step forward. Or in my case, to do what has always come naturally.

Being a talker with a hearing loss hasn’t always been a good thing. In fact, it’s caused me countless embarrassing exchanges more times than I have data for.But I discovered that if I talked I didn’t have to listen — or listen as much. I would simply try to outrun the speaker’s attempt at a conversation. I would try to anticipate where the conversation was going and leap into the middle of it with some confirming words or experiences of my own to try that might match the “attempted” conversation.

Continue reading “Talk to Me: Hearing is Not Listening”

Making a Difference in Haiti

Getting involved in charity work raises a lot of questions on what the right way to do things is. I have the privilege of being a member of the Hear the World Foundation since it was initiated in 2006. It’s a wonderful feeling to be able to help.  But spending the money wisely is not as easy as it sounds. What kind of projects should we support? How do we define sustainability? There are so many deserving projects out there, how do you choose?

One learning has been the importance of visiting projects personally. It’s been a mere week since I returned from Haiti. I cannot stop thinking about what I have seen there. You can say it has truly gotten under my skin.

Continue reading “Making a Difference in Haiti”

Talk To Me: Getting Along

For much of the past 37 years in which I’ve been, let’s say, “engaged in hearing loss,” I’ve played the good soldier. I reject labels like “suffering from,” and try to limit my whining unless it’s absolutely necessary.

I get my hearing aids, have the appropriate adjustments made, employ compensatory techniques and body positioning strategies, and bluff my way through thousands of interactions. By necessity I curtailed listening to and making music and attending concerts, shows and events, stayed home a lot, endured the requisite stress, embarrassment and isolation, and came to look upon my hearing loss as a kind of badge of courage.

And in all that time, I have done my part to be a good listener, too, because, well, that’s what we do, isn’t it? It’s up to those of us engaged in hearing loss to try and fit into the hearing world, right?

Then, a while ago, it hit me.

Continue reading “Talk To Me: Getting Along”