Face me, I read lips

Last week, Shanna Groves posed a question in the Say What Club Blog. Is there a Hard-of-Hearing Culture? My gut response was NO. There’s a Deaf culture, but HH/deaf culture?? Nah. I can’t stop thinking about it. The more I learn about Deaf culture, the more I feel set apart. The main difference between Deaf and deaf is language, and it’s a huge difference.

Is there a Hearing culture? The Deaf might say so.  But if someone ever asked my culture I would answer that I’m American.  I’m also hard-of-hearing, raised-protestant-now-religion-undefined, and vegetarian. Maybe I behave differently from some Americans, but all of my behaviors fall within American norms more or less.  I’d call religion and vegetarianism interest groups. Is being hard-of-hearing the same?

I googled the definition of culture and found an anthropology website that named a combined set of properties cultures share. They are: shared, learned, symbolic, transmitted cross-generationally, adaptive and integrated.

Wikipedia defined culture similarly –

• an integrated pattern of human knowledge, belief, and behavior that depends upon the capacity for symbolic thought and social learning

 In other words, you can’t be born with a culture. Cultural patterns, beliefs and behaviors are learned. Wikipedia’s second definition was –

• a set of shared attitudes, values, goals, and practices that characterizes an institution, organization or group.

It’s interesting. Do HH/deaf people share certain behaviors? I can think of many ways they do. For one thing, like the Deaf most hh/deaf rely heavily on their vision for communication, but oral language and lip reading seems to be the most widely used way to communicate, not ASL. Maybe it’s because most of us (not all) are late-deafened and we learned English as children. It’s certainly NOT because lip reading is the most effective way communicate.  Shanna mentioned attending HLAA and ALDA meetings where hh/deaf people used both verbal language and signing– sim-com and pidgin sign. Few use ASL exclusively.  I see the same thing, everywhere– HLAA, ALDA, IFHOH, SWC.

There is some symbolism associated with hearing loss. I would say lips are our symbol, comparable to the Deaf’s ILY sign. Most of us have been handed a ‘Face me, I read lips’ pin at hearing loss meetings and conventions. They seem to be everywhere at our functions.

Our poems, our words, our art is different from Deaf art in some ways too. Like Deaf we feel a disconnect with the majority of hearing people we associate, but unlike Deaf we don’t have a separate language to fill the gap. Our art is filled with allusions to broken dreams, loneliness, communication barriers, and misunderstanding. I see it as a kind of painful beauty like the metamorphosis of a butterfly. The butterfly is another symbol many of us identify with. While Deaf art glorifies hands, HH/deaf art exaggerates lips, mouths and ears, sometimes mutilated ears. (Informal study on my part.)

There’s a learning curve to navigating hearing loss. We’re not born lip readers. The way we behave in restaurants, our pickiness about seating arrangements, sitting in corners at parties with our backs to the wall, searching out spots with good lighting, our preferences for carpeted rooms, the routine care of our hearing gadgetry- these are all learned behaviors. We teach these ‘tricks of the trade’ to the newly deafened.  It’s what we all do.  Signing is encouraged to a certain extent, but not emphasized.  If you hang out with these groups long enough, you WILL pick up some sign.  We also have bad habits as a group. Bluffing is a biggie.  Accidental interrupting is another.  We’re aware of it and call each other on it.   

Is our culture passed across generations? Like the Deaf, many HH/deaf parents have hearing children. Though our children don’t learn a different language, they do learn different communication behaviors—waving at and tapping a parent to get attention, and making sure to look people in the eyes when talking. Our children learn at a young age they can sass us when our backs are turned, but our noses can smell trouble a mile away. Repeating and rephrasing becomes a way of life.    Additionally, just as Deafness runs in some families, mild to severe hearing loss runs in some families. So–there is a cross-generational aspect to the deaf/hh group, but not as strong as Deaf culture.

The HH/deaf have similar values and goals to the Deaf regarding access, but we differ a little bit on the ASL issue. We’re more accepting of hearing aids, cochlear implants and any technology that enhances English understanding. Technology offers the ability to communicate with our hearing families and friends, not ASL. Still many of us do appreciate visual languages, though we’re generally more open-minded about those—simcom, pidgin sign, signed English, cueing. . .anything goes.

Like the Deaf, the hh/deaf have their own separate clubs where they socialize and discuss hh/deaf concerns. We share inside jokes about hearing aid and implant mishaps, and funny hearing bloopers. We’re big on trying each other’s gadgets. Pencils and paper are almost always available for those who need them and we’re patient about writing stuff down. Expectations for hearing and signing abilities are pretty low, but most of us speak. Our organizations are growing and becoming very strong politically.

Like the Deaf we are proud of our hh/deaf heroes– Juliette Low, Thomas Edison, Beethoven, Deaf (Erastus) Smith, Robert Weitbrecht, Cal Rogers are only a few. We have our own history. Our heroes read lips, spoke, and some could also sign.  We look up to people who have moved beyond deafness, unlike the Deaf who sometimes revere their Deafhood.  We are people who happen to be deaf.  They are Deaf people.  The difference is subtle, but important to both groups, I think.

The evolution of hearing equipment and teaching techniques enabling oral communication is part of our shared history with the Deaf.  The hh/deaf tend to bestow gratitude on organizations like AGBell and cochlear implant companies.   I’ve spoken with many oral deaf who endured the rigors of speech therapy as children and are glad they can communicate orally today.  Many Deaf who can speak take a dim view of forcing oral language on Deaf children.  Some even consider it child abuse.   

The hh/deaf are distinct from the Deaf and hearing people in many ways.  We value oral languages and visual languages.   We feel kinship with hearing people and Deaf people.  We have been hearing.  We are now deaf. 

What do you think? Do the hh/deaf have their own culture? Or are we merely an interest group?

My beloved cat Annie passed away last Monday night.  She lived a good long life and I’m grateful for the time we had with her.  Her playful, loving spirit brought much joy to our lives those sixteen plus years she lived with us. 

I mentioned her hyperthyroidism in a previous post.  I had taken her to the vet on Friday, April 17th for another check up.  This time blood tests revealed her kidneys were failing and she had numerous other problems including heart murmer.  She died peacefully in her sleep before we got a chance to put her down ourselves.  I’m thankful for that.    

For awhile now I knew I wanted another cat.  But Annie’s poor health prevented me from adding more stress into her little life.  I knew she couldn’t adjust.   

It may seem early, but I’ve already adopted a new cat friend.  There are so many animals in need of good homes in this bad economy.  I seriously considered trying to find a deaf cat, but there were none advertised in this area.  Then, after some HUGE animal walked around our roof the other night, I decided maybe a deaf cat wouldn’t be safe in our neighborhood.  We’ve got coyotes, bobcats and wolverines plus there has been a bear in my yard.  My brother-in-law, a wildlife biologist for the state of Washington has also said that wherever you find deer, cougar are not far behind.  Though I’ve never seen  a cougar in my yard (Thank God!), there have been cougar sitings not far from here.  We have deer all over the place.  Most deaf cats are white– not good camouflaging in this part of the woods.  Not that I expect to let my cat out, but obviously accidents happen and animals do get out sometimes. 

Meet Molly.  She’s a little brown tipped tabby with a striped tail.

Molly

She’s only 18months old and the sweetest little girl.  She had been abandoned and nearly euthanized before Homeward Bound picked her up from another over crowded shelter.  I know someone who has fostered kitties for Homeward Bound in the past and knew it to be a professional organization for cat  and dog placement.  I can’t say enough good things about them.   I expected the smell of cat to hit as soon as I walked into the cat adoption room, but the place was as sterile as a veterinary hospital.   I couldn’t smell anything, except some kind of cleaning solution. 

Because of the fostering system you know as much as possible about the pet before taking it home.  In Molly’s case, I knew she had lived with other cats and dogs before, but not children.  She was also litter box trained, had a slight eye issue, and liked to sharpen her claws on a cardboard thingy specifically for that purpose.   Homeward Bound threw in all her favorite toys, including the claw sharpening thing, and a cat harness in case I decide to take her outside in the future.  She especially loves to play with a little jingle ball, and it’s funny to watcher her bat it around then go after it.

The first night she found a shoebox of old doll clothes to curl up in even though I made a cushy bed for her out of blankets.  Now she sleeps under a lamp table in the family room next to a sliding glass door with a nice sunny exposure.  She’s still a bit shy, but so starved for affection she can’t help coming out for a hug when we call her.  If you live in the Seattle area and are considering getting a new cat or dog,  you might think about Homeward Bound.  The cost of their pets aren’t ‘free’, but the price is extremely reasonable considering they are already spayed/neutered, socialized, checked over for any problems, de-flead, and up to date in their vaccinations.

Hospital Hall

Originally uploaded by memekode

Today after work I volunteered to take a gift to a coworker who was in the hospital ICU.

I find the information desk easily, explain I am deaf and have come to visit a friend. After two attempts at directing me with her head turned, the volunteer finally decides it might be easier to escort me halfway. We walk down two long halls, then she stops at a third hall and points to a set of double doors at the very end. “There’s the ICU.” she says and walks away. When I reach the double doors, I realize they are locked. Crap! I should have thought of that. In order to get inside you must call. On a PHONE! An arrow points to a room full of people where the phone is located. I find it on a small desk.

Nervously I reach for the phone. Dial. Then wait until I hear a faint sound that could be a voice.

“I am deaf,” I explain. “I can’t hear you on this phone, but I need to visit a friend, Karen Parker (not her real name), in ICU.”

A faint voice may or may not be talking. I think I hear something, but I am not sure.

“Hello? What?? I am deaf and I can’t hear on this phone. I need someone to come to the ICU door, so I can visit my friend, Karen Parker.”

Yes– it sounds like a voice–and it seems to be explaining something.

“What? I am DEAF. I can’t hear on the phone. Will someone let me in so I can visit Karen Parker?”

I am quite sure it’s a voice now. Explaining something I cannot hear.

“What? Hello? I am deaf. HELLO?? HELLOOOO? I am DEAF. I cannot hear–”

The line is dead. Or maybe it was dead all along. I am not sure with my tinnitus and all. Maybe there never was a voice.

The people in the room have stopped talking and now they are all staring at me. I have been yelling into a phone that I am Deaf and cannot hear.

I hang up and go to the ICU door in the hope that someone will come.

Just a snapshot of my life.

Annie Gray

Many years ago, a friend of ours took my daughter and I to her neighbor’s barn knowing there were free gray kittens.  Our agreement was she (the friend) would have first dibs. 

Annie had a small beige spot about the size of a quarter on her chest, and her left hind foot had pink toe pads instead of black like the other three paws.  Otherwise she was totally gray with big green eyes, black nose, whiskers and toe pads.  Now that she’s so old, her whiskers have turned white, the rest of her toe pads have turned pink and other beige-gray patches have appeared.  Because of the beige my friend picked the ‘flawless’ gray kitty- a male– and left us with Annie.  

She has outlived her brother (who was hit by a car as a kitten) by nearly seventeen years.   In our house she has also outlived two dogs, several fish and two rabbits.  Now she has hyperthyroidism which keeps her from gaining weight even though she eats like a little pig.  The vet has been telling us for two years that her organs will probably give out ’soon.’    We don’t have much time left with her. 

Annie has never been a sound sleeper, which is why I thought this video was so funny.  There is no talking.  Enjoy! 

 

Haha!  I LOVE cats.

This is an unusual thing to write about here in my blog because normally I don’t choose to discuss religious beliefs. I respect all. I guess one reason I’m writing about it today is I’ve come to realize how becoming deaf has changed me spiritually.

First I’ll start by explaining I had an comprehensive Christian upbringing. It’s safe to say family life revolved around church when I was a kid. We went to church several times a week. Church was a happy place for me. I have great memories of vacation Bible school, choir, playing games, making religious art work, and singing in Sunday school. As a teenager I went on church ski trips and slumber parties. I wanted to share all that with my own kids, but as my hearing went, it didn’t work out.

At first, I sat upfront so I could hear and lip read the minister better. Next, I avoided church services by volunteering in the nursery. Later, I began to searching out other churches where the minister maybe had a more booming voice or better sound system. We tried every church fitting our religious beliefs within a half-hour’s driving distance. I couldn’t hear at any of them. None of them offered even the most limited accommodations– such as preferred seating for the hearing impaired, not to mention FM systems or ASL interpreters. So we stopped going all together. I decided God would understand. I wasn’t getting much out of it.

One day a friend mentioned some research she had done on meditation. She claimed it helped her get through chemo therapy. This woman was amazing! During one six month period, she had surgery, went through chemo, her husband left, her dog died, she lost all her hair, then her mother died– all the while packing up to sell her house! And yet, she remained upbeat throughout. Dang! It didn’t take much to convince me she was onto something with the meditation stuff. She dragged me to a couple guided meditations.   The experience provided insight far beyond what I expected. We discussed Buddhism, Hinduism and other religions that incorporated meditation into worship, including different types of Christianity.

Shortly thereafter, I had an awesome, indescribable spiritual experience that changed my life. Long story I won’t go into here, but I realized wherever I go, God is there. Everywhere. Inside and all around.

Slowly I began to shift spiritually. Eventually I decided to create a small altar for meditating. At a thrift shop, I found the perfect wooden foot stool with a drawer in it. The woman who rang up my purchase threw in a picture of Jesus and some Catholic prayer beads for free which was weird because she didn’t know I was making an altar. A meditation book I read recommended including a picture of your God in addition to a few ‘totems’ that might be meaningful on the altar. In my heart I was still Christian, so I was especially pleased with the Jesus picture — and took it as a good omen that I was supposed to have an altar with Jesus on it. The totems I chose were symbols of places where I felt most at peace– a pine cone represented the woods; a shell symbolized the ocean. A hand carved butterfly represented my metamorphosis from hearing to deaf. It wasn’t until a long time after that I learned that butterflies were deaf! The prayer beads came in handy too. It all seemed to fall together like it was meant to be.

Then a couple more preternatural events conspired to convince me I was on the right track with meditation practice.

I’ve found Buddhist meditation the most useful. Incidently many people think that Buddhists believe Buddha is God. Not so. Buddhism is dissimilar from other religions in that you can believe in any God or no God. It is both a philosophy and a religious practice. The  Middle Way  , which involves living ethically, is your key to enlightenment.

Meditation is not much different from prayer. Tibetan Buddhists repeat mantras about compassion while using mala beads. Hindus also use mala beads in their chants. My rosary has exactly half as many beads as the mala– which I have always thought an interesting numerical coincidence. In any case, a person can say her Buddhist metta with a rosary, and a Catholic could say his Hail Marys with a set of mala beads. Personally I don’t think God cares which kind of beads you use, and it also probably doesn’t matter whether you chant about compassion or pray for forgiveness. Here’s a video that illustrates the typical Buddhist metta, which always involves compassionate meditations (blessings) for self and others.

One book I read recently defined the difference between meditation and prayer this way. With prayer you talk to God. With meditation you listen to God. I guess God decided it was high time I stopped doing all the talking, and started listening.

A Wedding – frozen in action

Originally uploaded by Brad?

Does this scene scare you?

One of the most difficult challenges of lost hearing is dealing with large celebrations involving your own family. This past week I went to a family wedding out of state. Though I grew up with most of my cousins many of us moved away over time. Now we’re scattered across the US like sprinkles on a cake.

Since I used to hear better than I do now some of them have a hard time remembering I can’t hear. I have to remind them over and over– which is better than bluffing. In a perfect world everyone would sign and speak at the same time. I only see some of my cousins once a decade — if that. And I’m the only deaf person they know. It’s probably unrealistic to expect any of them to take up ASL.

Wedding receptions tend to be especially noisy and exhausting for those of us who rely on lip reading. I don’t really want to go into specifics here except to say that all those flapping lips can induce panic attack.

It’s nice to be home despite the freezing rain.