Exclusion Confusion

Many late-deafened people feel isolated when their hearing loss is first diagnosed. I mentioned before that I never knew one single person who wore hearing aids when I first got mine in my early twenties. Most of my friends at the time were finishing up grad school, getting married or having babies. Usually I was the only one they had ever encountered with a hearing loss, other than possibly an elderly grandparent. Conversations revolved around the usual subjects young people that age discuss--pop culture, school, boyfriends, babies, breastfeeding, husbands, sex and childbirth. When I turned the discussion to my hearing aids, I'd be met with blank stares as they tried to process what I was going through. I learned quickly enough most people my age couldn't handle it.

The isolation was overwhelming at times. When you develop a disability at a young age, it changes you. My eyes were opened to a truth few were willing to accept-- that life is unpredictable and unfair. Disability can settle on anyone at any time for no particular reason, and there's often no cure. Depressing? It can be, but you learn to adapt and take pride in your ability to adapt, because adapting becomes your life.

I can't imagine growing up deaf or being the only six-year-old who wears hearing aids in a mainstreamed classroom of giggly first-graders, though those I've met have who grew up HH are remarkably well adjusted. Sometimes I think part of the problem for adults who lose their hearing is an identity crisis. At one time I was a different person, then my world turned upside down. My life seemed to be on hold, because not only had I developed a hearing loss, but my hearing was unstable. I've continued to lose more and more hearing all these years.

With the knowledge that my hearing could take a nosedive at any moment, it's been hard to carve out a path. I've learned to live in the present. This is where I am today. I don't know where I'll be tomorrow. I crave the stability of structure and a backup plan more than most. The unknown is scary. I'm dependant once again on something (someone) I can't count on, only this time that someone is ME. Luckily I married the Rock of Gibraltar whose unwavering devotion, routines and support is as predictable and solid as they come. He doesn't drink.

This is a great blog about camps for young HH, deaf children set up so they won't feel so isolated. http://aslci.blogspot.com/2008/06/calling-solitaires-for-research.html In a few weeks I'm going to "adult camp"-- two of them back-to-back. I couldn't be more excited. You see, late-deafened adults need to connect with each other too-- just like kids. Adult camp usually takes place in big cities. There will be interpreted workshops with CART, trips to restaurants in large groups of people who can't hear, tours for the deaf, and lots of hanging out in bars.

Conventions with HH, deaf people are the highlight of my summer. Normally, I'm paralyzed by group socializing with hearing people because of all the lips needing to be read, but not with this crowd. We write, sign and repeat as often as needed until **everyone** gets it. No judging. We all know deafness does not equal stupidity.

This year I'm going to the International Federation of Hard-of-Hearing people up in Vancouver, BC, Canada. Then I'm going to Philadephia for the Say What Club convention. There, I'm going to meet with a few DeafRead bloggers, and old friends I don't get to see all the time, and we're going to have a blast!! ALDA and HLAA also have adult "camp" (conventions) for people with hearing loss. I believe the HLAA con is coming up soon, but I couldn't swing it in addition to the two others. IFHOH was a priority since Vancouver is so close, and it rarely gets held on this continent. Also I get free room and board with an HH Canadian friend.

Because of my experience of growing up hearing, then becoming deaf, I value inclusion above all else. I've felt EXcluded too many times among the hearing that I find the exclusionary practices of DeafRead offensive. I haven't blogged about this before, but when DeafRead failed to provide CART for their convention in SF after I requested it last spring, I realized I don't really belong here, though I've stayed to learn more about Deaf culture. Also, I had hoped with the influx of CI blogs, they would become more inclusive over time.

There was really no GOOD excuse not to accommodate me. I requested the accommodations more than two months in advance of the convention. The thing is, the Say What Club is equally as small as DeafRead, and they're committed to providing interpreters as well as CART for their conventions, so ALL attending will be able to understand. I realize interpreters are expensive. We ALL know that. The point is if we want to be included, then we should all be models of inclusion.

Now DeafRead has booted off Cochlear Implant On-line under a trumped up charge that she's in cahoots with Cochlear. This is so ridiculous I'm speechless. A person can not be an "employed volunteer." She makes no money off Cochlear. While I realize many of you don't like Rachel's blog, wasn't it enough to exclude her from your "custom" feeds?

Further, I've since found out DeafRead has disallowed a cueing blog from joining.

DeafRead has become an uncomfortable and unwelcoming deaf community for those of us who use our voices.

tunnel of deaf

Up in the Cascade mountains there is a bike path with a crumbling old two-mile tunnel called the Iron Horse Trail. Even on the most beautiful summer day, the tunnel is cold, dank and pitch-black. Once inside if you hold your hand in front of your face you can’t see it. After riding about the three-quarters of the way through, just when you lose all hope of ever seeing light again, a teeny bright pin-prick twinkles up ahead. As you ride towards it, blackness gives way to gray, the dimness of the tunnel fades, and soon you’re out in the warmth of daylight again. The views on the other side of the tunnel are glorious!! Much more magnificent than when you entered. Here, you’re on top of a mountain clearing looking out over miles and miles of the Cascade Range. Just you and the mountains. It seems like you‘ve gone through hell to get there.

Few people ever make that trip.

Many times I’ve thought of that Iron Horse Trail as a metaphor for my deaf journey. I haven’t been on it since my son was young enough to enjoy biking with me. The last time we were up there, we spent an afternoon riding down the mountainside with some friends, and it was one of those hot summer golden days of motherhood where everything seemed just right with the world. Before he became a rebellious teen. Before our friends were transferred across the country to Florida. Before my hearing took yet another nose-dive.

Late-deafness brings a lot of garbage and grief with it. Many of us spend years wandering around inside a dark tunnel. Few of us enter willingly. I say “few” because there actually are those who destroy their hearing on purpose, but that’s another story for another day. The rest of us end up in the deaf tunnel kicking and screaming. We’re never prepared. We don’t have flashlights or sweaters. We have no idea how we got there or what’s up ahead. We’re cut off from our daily activities, friends, and we feel lost. Trapped.

Eight years ago that’s where I was. And it was there, deep inside the “deaf” tunnel I made some of the best friends I’ve ever met through an on-line support group called the Say What Club. We leaned on each other for help until we made it out the other side. They taught me how to deal with my deafness, and eventually I was able to help others. I’m still learning. Life goes on and it’s good on this other side of the tunnel-- the deaf side.

These past few weeks I’ve been working on a blog so my deaf/ hard-of-hearing friends and I could share our late-deaf/hard-of-hearing experiences with others. I am hoping you will enjoy reading their entries and possibly learn something about late-deafness. Our hope at the Say What Club is to help those struggling with hearing loss. Those who are new to hearing loss or those just wanting some support. We hope to shed light on the everyday challenges people new to hearing loss face and maybe help with coping strategies so we all can get on with living full productive lives. We don’t have all the answers, but we listen. Please stop by.

Say What Club Blog

(Cascades by NateFish3000, Snoqualmie Tunnel above by Ray Fischer)

Lessons from Dr. Seuss

When I was a little girl my favorite bedtime story was The Sneetches. My dad used to read it to me using funny voices. It wasn't until many years later, I realized this book was really about racism. I think because the message contained in this book was so important to my dad, he took great care to read it in an entertaining way, so I would understand. You see, as a little girl I lived in a suburb of Detroit during the Civil Rights movement, when there was much racial tension between black and white people. I lived in a white neighborhood. Many of our neighbors were racists. My dad didn't approve of racism, and was strongly in favor of Civil Rights. He used to argue with neighbors over this. He did things other white people found intolerable-- such as making friends with black people and inviting black coworkers to his cocktail parties. To a certain extent, I did understand the message of this book as a small child-- that it was wrong to be unkind to someone because of how they looked. I could relate to the feeling of being left out. I also understood my dad was different from most our neighbors in that he wouldn't allow racial slurs or jokes in our home.

Today, I was reading in one of my favorite bloggers sites. She's oral-deaf, and made a comment about what it's like.


"For a deaf chick that has a habit of running her mouth has grown up in what some people have called the “hearing world,” I never found a hearing person who could relate to me and my quirky ways of getting through the day. I have been called weird countless of times and I acknowledge that since I eat pizza with a fork, put potato chips on my hoagies, and I swallow gum. Ironically, I have almost NO experience with the “deaf world” and what little experience I did have I was shunned. When deaf people can talk, there seems to be a common theme that people like me are deaf to the “hearing world,” and hearing to the “deaf world.” Where do we fit in? We don’t. Personally, I feel that there is no such a thing as a “hearing world” and a “deaf world” because it implies that the world is divided by a common denominator, which is a contradiction unto itself. Last time I checked, we all walk on the same terra firma, witness the same solar rotation, and feel the same splash of rain on our face. I don’t define the world I live in as a white or black world, or a Christian or Jewish world, or a Wal-Mart or Target world, so why would I lend to reason that a hearing and deaf world exist? I feel the world is my oyster and I intend to crack it open." http://contradica.blogspot.com/2007/12/greatest-moment-of-year.html


Lately I have been thinking the message of Dr. Suess could be applied to Deaf and deaf. From my perspective and many of us on the 'd' side of the fence, the d/Deaf distinction is about exclusion and disharmony within a community. We feel like a Sneetch without stars on our bellies wherever we go.


Here is the story of the Sneetches once again.

Bellies With Stars

THE SNEETCHES by Dr. Suess

Now the Star-bellied Sneetches had bellies with stars. The Plain-bellied Sneetches had none upon thars. The stars weren't so big; they were really quite small. You would think such a thing wouldn't matter at all. But because they had stars, all the Star-bellied Sneetches would brag, "We're the best kind of Sneetch on the beaches."



With their snoots in the air, they would sniff and they'd snort, " We'll have nothing to do with the plain-bellied sort." And whenever they met some, when they were out walking, they'd hike right on past them without even talking.

When the Star-bellied children went out to play ball, could the Plain-bellies join in their game? Not at all! You could only play ball if your bellies had stars, and the Plain-bellied children had none upon thars.

When the Star-bellied Sneetches had frankfurter roasts, or picnics or parties or marshmallow toasts, they never invited the Plain-bellied Sneetches. Left them out cold in the dark of the beaches. Kept them away; never let them come near, and that's how they treated them year after year.

Then one day, it seems, while the Plain-bellied Sneetches were moping, just moping alone on the beaches, sitting there, wishing their bellies had stars, up zipped a stranger in the strangest of cars.

"My friends, " he announced in a voice clear and keen, "My name is Sylvester McMonkey McBean. I've heard of your troubles; I've heard you're unhappy. But I can fix that; I'm the fix-it-up chappie. I've come here to help you; I have what you need. My prices are low, and I work with great speed, and my work is one hundred per cent guaranteed."

Then quickly, Sylvester McMonkey McBean put together a very peculiar machine. Then he said, "You want stars like a Star-bellied Sneetch? My friends, you can have them . . . . for three dollars each. Just hand me your money and climb on aboard."

They clambered inside and the big machine roared. It bonked. It clonked. It jerked. It berked. It bopped them around, but the thing really worked. When the Plain-bellied Sneetches popped out, they had stars! They actually did, they had stars upon thars!

Then they yelled at the ones who had stars from the start, "We're exactly like you; you can't tell us apart. We're all just the same now, you snooty old smarties. Now we can come to your frankfurter parties!"

"Good grief!" groaned the one who had stars from the first. "We're still the best Sneetches, and they are the worst. But how in the world will we know," they all frowned, "if which kind is what or the other way 'round?"

Then up stepped McBean with a very sly wink, and he said, "Things are not quite as bad as you think. You don't know who's who, that is perfectly true. But come with me, friends, do you know what I'll do? I'll make you again the best Sneetches on beaches, and all it will cost you is ten dollars eaches.

Belly stars are no longer in style, " said McBean. "What you need is a trip through my stars-off machine. This wondrous contraption will take off your stars, so you won't look like Sneetches who have them on thars."

That handy machine, working very precisely, removed all the stars from their bellies quite nicely. Then, with snoots in the air, they paraded about. They opened their beaks and proceeded to shout, "We now know who's who, and there isn't a doubt, the best kind of Sneetches are Sneetches without."

Then, of course those with stars all got frightfully mad. To be wearing a star now was frightfully bad. Then, of course old Sylvester McMonkey McBean invited them into his stars-off machine. Then, of course from then on, you can probably guess, things really got into a horrible mess.
All the rest of the day on those wild screaming beaches, the Fix-it-up-Chappie was fixing up Sneetches. Off again, on again, in again, out again, through the machine and back round about again, still paying money, still running through, changing their stars every minute or two, until neither the Plain- nor the Star-bellies knew whether this one was that one or that one was this one or which one was what one or what one was who!

Then, when every last cent of their money was spent, the Fix-It-Up-Chappie packed up and he went. And he laughed as he drove in his car up the beach, "They never will learn; no, you can't teach a Sneetch!"

But McBean was quite wrong, I'm quite happy to say, the Sneetches got quite a bit smarter that day. That day, they decided that Sneetches are Sneetches, and no kind of Sneetch is the BEST on the beaches. That day, all the Sneetches forgot about stars, and whether they had one or not upon thars.

I have no use for labels. Thanks DAD!

Lost in a Dark Woods

Sometimes when you are late-deafened, you feel you are lost in a dark, mysterious woods with two people. One is called Hearing, the other Deaf. You have a lantern, but can't light it because you forgot to bring matches. They both possess matches. However, instead of simply lighting your lantern they argue and argue about the best route for you to take home. Each of them pull you in opposite directions. Meanwhile you become cold and frightened and more and more lost.

Then, just by chance another late-deaf person comes along who has a match but no lantern. Off you go working together, finding your way by trial and error. The route is lonely and scary. Along the way you encounter a few other late-deaf and oral deaf people struggling to make sense of the trail. You link together lighting each other's way and sharing information about what you've learned of each other's paths. If one of you gets lost or makes mistakes, no one criticizes. No one tells you you're not acting like a Deaf person. No one treats you like you're "impaired." No one sniffs that you've insulted their culture. No one laughs at you when you misunderstand. You all acknowledge that hearing is hard and learning to be Deaf is hard. Eventually you begin to feel comfortable and accepted being neither hearing or Deaf, but rather just a deaf person who speaks and maybe uses a little ASL and hearing aids or a CI, maybe some ALD's sometimes, maybe not, maybe CART, maybe an interpreter, whatever works. . .

Later on when you bump into Deaf and Hearing again, Deaf asks, "Why didn't you follow ME? I had a match, and I would have lit your lantern! You could have learned ASL!!" Hearing asks the same question, reminding you Cochlear Implant was just around the next bend.

You realize you will never be able to follow Deaf or Hearing. They don't understand.