Treasure Award/ Blogging for Beck

This is long overdue, but I wanted to explain about the Treasure Award that has been on my blog for the past few weeks. A friend awarded it to me. What a shock because I treasure her blog more than she knows! Her "Blahg" is listed in my favorites to the right under "Melissa."


The idea was to pass it on, so I passed it on to Abbie of Chronicles of a Bionic Woman. She blogs with such intelligence and wit about her life with a cochlear implant. I always learn something new. Go there-- learn and laugh.



Next I wanted to mention a third blog in my side bar, Beck's Blog. Beck struggles with NF2 -- a rare debilitating condition that causes late-deafness due to tumors forming around nerve tissue. She hears NOTHING, so she learned ASL as an adult-- not easy when you grew up hearing. NF2 also affects the eyes and spinal cord. Additionally, Beck is a survivor of Hodgekin's Lymphoma, a rare cancer. She is one of the most inspirational people I know. Like the energizer bunny, she just keeps going and going. Currently she's training to climb up the tallest skyscraper west of the Mississippi, the Columbia Tower in Seattle. This is no small feat given all her challenges. She's hoping to raise money for the Leukemia and Lymphoma Society. If you would like to donate to the cause, here's a link http://www.active.com/donate/2008bigclimb/bc08RDufek and there's another link below. Contributions are tax deductible.



Her sister wrote this beautiful message about her that I can't top so I won't:
Every morning, the ritual starts from the top. Eye drops first, then a moment to collect herself before getting out of bed. When she does, it’s slow going, reaching out for bookcases, furniture, and door frames to stay upright on the long trek to the bathroom. Constantly growing brain tumors have plucked many things Rebecca Dufek (DeGrand) once took for granted: her tears, her hearing, and her balance, just to name a few. But this story isn’t about what was taken. It’s about what Rebecca is giving to and getting back from life. Even though every day for her brings a new set of obstacles, she’s taking on challenges most people never dream of. In the process, she’s changing countless lives one step at a time.


An avid diver and hiker, Rebecca and her then-fiancé packed up their things in a small trailer and headed west in 1996. From Escanaba, MI to Seattle, WA, they moved to a land of mountains and water to quench Rebecca’s thirst for the outdoors, but her dreams were about to be scaled back.


“I had wanted to be a mountain climber but I waited too long and lost my balance function before ever having a chance to do those things,” Rebecca said.
Rebecca lives with Neurofibromatosis Type II, or NF2, a disease where brain tumors attach themselves to vital parts of the brain and are difficult or impossible to remove. They continue growing and causing more problems as they crowd out things like the auditory nerves, causing deafness, facial nerves, causing paralysis, and in Rebecca’s case pinching her brainstem, causing a myriad of problems including a loss of equilibrium that makes common daily tasks like descending stairs daunting. Multiple brain surgeries are inevitable. She underwent her first open brain operation in September.


“It took 8 years to accept that [I couldn’t get out of having brain surgery] and prepare for it while the tumors grew,” she said. The way she prepared was by forcing her body to stay active and in shape, even as the tumors were making those activities harder and harder.
“All surgeons say that it is most ideal to go in [physically] strong to better your chances of getting through the surgery and having a successful recovery,” Rebecca said, “So that is how I get the best quality of life available to me; I train to be a survivor.”
Now, only 5 months after that surgery, she’s on a mission to climb Seattle’s highest skyscraper.


The Columbia Tower stands at 69 floors (that’s 1,311 steps) and Rebecca’s two-person team will climb the building on March 16th for the Leukemia and Lymphoma Society. The event is called the Big Climb, and attracts thousands who climb the skyscraper each spring, raising money to fight blood cancers. For Rebecca, it’s also a personal journey to help others like her; other cancer survivors, that is. She has also been in remission from Hodgkin’s Lymphoma for 15 years this May. She is among only a handful of people in the world to survive cancer and then be diagnosed with NF2.


But none of that has stopped her from her quest to make a difference for others however she can. Rebecca has already done numerous running events to benefit NF2 research, the American Cancer Society’s Relay for Life, and she walked the 2006 Seattle Marathon with the group Team in Training, raising almost $3,000 for blood cancers. She also climbed the Columbia Tower for the LLS last year, not long after her grandfather, Clarence DeGrand, passed away from a blood cancer called Myeloma.


“When I reached 49 floors and there was a sign for 20 floors left to go I started hooting and hollering,” she said, remembering the experience, “When I reached the top and the sunlight poured in from the picture windows in the tower it was a heavenly feeling. I felt closer to Grandpa and was overwhelmed with happiness.”


This year’s climb is also dedicated to her grandfather, and in part because of his spirit, Rebecca plans to continue her athletic and charitable ways as long as she can. However, she knows better than most how quickly the abilities you take for granted can disappear.


“With NF2 you don't know how long it is going to last, so I like to grab opportunities when they come and not let them slip by,” she said, “I am addicted to the highs of life. In all the things I have been through, cancer and brain tumors, it makes me feel alive and that I am living [life] to the fullest by doing such activities [as climbing and hiking].”


“At the same time I am also doing them for an important purpose,” she added, wondering aloud why anyone with the ability to help wouldn’t put forth an effort, “We all have a personal responsibility to contribute to the common good and to society… It is basic humanity.”
The morning ritual is now over, but the day ahead brings many more. Today is training day. Rebecca tells me that living with NF2 makes every day a training day of sorts, but knowing she’s training for others makes her more eager to get up and do it all over again the next day. She finally makes her way carefully down the stairs. That’s when our eyes first meet on this chilly, Seattle morning. Since she is deaf, I’ve been standing outside peering into her living room window, waiting to catch her attention. She greets me with a wave and an enthusiastic grin. It’s time for us, two sisters, to train for the Big Climb.


So far, we are the only members of a team Rebecca aptly named “High on Life.” Her experiences dealing with everything life has to offer, good and bad, have given her an amazing appreciation for the complex journey that it is. That spirit has rubbed off on me, too. Although our team is small, we both know we are a part of a much larger team of people making the effort to save lives.


“Thankfully there are others who feel the same way that I do and that is why I am here,” she says of those who came before her and allowed research into Hodgkin’s Disease to save her life, and keep a sister in mine.


“Now it is my turn to pick up the torch and carry it for someone else,” Rebecca added matter-of-factly.


I’m proud to be Rebecca’s sister, and even more proud to know that our efforts could allow others to survive and understand that high on life feeling. Who knows, our little team could spur someone to make their own contribution. That may not mean climbing mountains, or even skyscrapers, but just making a difference where and how you can. My sister Rebecca holds a wonderful quote by writer Sydney Smith close to her heart:


"It is the greatest of all mistakes to do nothing because you can do only a little. Do what you can."


In the end, it could mean everything. It has for my family.
If you’d like to donate to the 2008 Big Climb, the High on Life team page can be found at
www.active.com/donate/2008bigclimb/HighOnLife. Better yet, if you or someone you know lives in the Seattle area, feel free to join our team or create your own

Dealing With IT-- Part 2

I covered humor and standing tall, but I failed to mention WHY you need to stand tall when you are d/Deaf. There are times-- and we all know it happens very occasionally-- but it happens to all of us that people are rude for some reason. You might call them audists. I simply call them a**holes. These are the people who make discourteous remarks about your deafness, as if they think you purposely developed d/Deafness solely to annoy them. We've all been there from time to time.

Or perhaps you are NOT a d/Deaf person. Maybe you struggle with some other issue. Maybe you are Gay and other people feel awkward about that for some unknown reason. Or maybe you're a vegetarian, or a Wiccan just minding your own business. Some people can't handle others who do things differently, so they say mean things. They feel threatened that you live your life another way. Or maybe you are a deaf person who prefers to speak, and other Deaf people can't stand it that you like to use your voice. Or maybe you are a Deaf person who prefers NOT to speak, and other deaf people can't understand WHY you won't talk. Why can't people just let everyone else live their lives in peace?

The problem for many of us is we didn't grow up "different." Everyone knew where our boundaries were, so we never had to assert them before. When you develop a difference such as a disability, (or even change religions or discover you are Gay) it's a new thing to have to assert your boundaries, and it may be uncomfortable for those of us who dislike conflict. Other people assume things about us based on what they've read about others in our minority group or movies they've seen. They stereotype us because they may be afraid to ask personal questions. This is why I suggested the humor earlier, to help others feel comfortable with your situation. It helps them see you're open about it. Some people just can't accept differences though.

Ever since I became a vegetarian a cousin teases me about how carrots "scream when
they're ripped out of the ground." Then she mimics them screaming in pain while I'm trying to eat my dinner. Of course the other meat-eaters laugh hysterically. It's especially annoying to me since I never tell omnivores what I find so repulsive about cattle and chicken farming. Whenever anyone asks, I tell them they don't want to know. I figure anyone who really wants to know can google it themselves.

Whatever it is that's "different" about you, the reason you need to stand tall is so when someone becomes an a**hole about it, you can adopt your FU look. I'm speaking personally about being d/Deaf or vegetarian, but I think this should work for Gays or Wiccans or Buddhists or people who have toenail fungus even -- whoever gets picked on. You'll need to perfect this look in the mirror until you have it just right. My late-deafened friend Jan mentioned it. She has it down pat.

You already have your shoulders straight. You've been smiling and cracking jokes. Jokes are a great ice-breaker and they show you have a sense of humor and that you're an open person. After the a**hole makes his/her remark, you will need to lift your eyebrows in shock, then give the a**hole the beady eye. (Look at the kitty.) Purse your lips and flare your nostrils as if you smell something putrid at the same time. You've been waiting for this moment, so you've practiced the look. It's also nice to have a couple of sarcastic come-backs up your sleeve, but the look should be enough. Since it's a stare down, you will not look away first. At some point, the a**hole will ask, "What you lookin at?"

This is when I might ask my cousin if she's done with her carrot act. Perhaps she'd like to be a turnip next? If the issue is your deafness, sometimes a simple statement such as, "I'm deaf. Deal with it," is enough. Trust me, they won't mess with you again.

There is no shame in disability or being different. When you stand tall, you force people to respect your boundaries. They sense your confidence. You don't have to take crap off anyone.

Dealing With IT

Today while I was sitting at the my library desk, once again I had to ask a little girl with the softest voice to repeat her question three times. Then I asked her to write it down because I couldn't make out one thing she said. Her lips barely moved. When I told her I was very, very hard-of-hearing (I never use the word "deaf" at work) and then asked her to write, she exchanged unsure looks with her friend before she took up the pencil and paper. I felt badly about being a weird library lady who couldn't hear. But there was no other choice. Worse, I'm not even a librarian. It turned out she wanted information on the "Thirteen Colonies" She was at the wrong desk. I only help with computer or circulation problems. So I had to send her next door after all that. I could have pointed her in the general direction of 973 American History. I do know the Dewey decimal system. But that's not my job and I had a line. (SIGH!) If she only needed help with a computer!

This past week three blogs hit me. Mike's blog, Abbie's and SpeakUp Librarian's. While Mike isn't late-deafened, he discussed adversity. I like Mike because he walks to the beat of his own drum, and he's a fighter. I don't doubt these qualities have helped make him become the success he is today. The way I see it, there is only one way to deal with the hearing world when you become deaf -- and that's head on. You can't beat around the bush and pretend you're hearing. If you are going to deal with Hearing people, you can't hide in your own little community of non-hearing people. I have lived too long among the Hearing to do that. I can't run away from them now, though there are times I'd like to.

Then there is Abbie who lost her hearing young, and at a critical time for a young person-- at the beginning of her career. But she got right back up and kept going without hardly skipping a beat. I'm amazed at her resilience. What a strong person she is!

What about Sarah-- the SpeakUp Librarian? Losing your hearing during midlife-- ah-- that's rough. You can't start over with a new career. She's in public service, using the phone. Like me, she's up to her ears in the hearing world. I know how it is in libraries. People whisper their questions. Sometimes you just want to scream "SPEAK UP!" The questions they ask can be so random and off the wall-- "How do I make that salt solution my doctor wants me to sniff up my nose?. . . I saw someone make a pie on TV and I want the recipe. . .I need someone's phone number in Ireland. . .What are the prison conditions in China?" I am happy to send all those questions to a librarian. Please God, just give me a computer question. Computers are easy. When you don't know the answer, you can blame it on a. . . . "computer glitch." Librarians have to listen carefully. I know exactly what Sarah does. Talk about daily adversity.

During my last job interview my current managers asked, "What are you most proud of in your life?" A lot of accomplishments came to mind, but when I really thought about it everything paled in comparison to meeting the daily challenges of living with a hearing loss. That was my answer. "Every day I face communication challenges and yet I've been able to live a relatively normal life and function fairly well." I'm really proud that I just lead a normal life despite the fact I'm disabled. Later, I thought maybe I blew it. WHY of all things did I talk about my disability?? OH GOD! How could I be so STUPID?! But I guess they liked my answer or other answers, because they hired me. When Sarah blogs I see a lot of myself -- the honest appraisals of her situation. Maybe it's because we both have progressive hearing losses. When you're late-deafened with a progressive hearing loss your condition is constantly in flux. You can't help but always be aware of it, and therefore maybe more focused on how you're coping.

Being deaf requires inner strength and develops character. I'm emphasizing little d-deaf. As a late-deafened person, I consider deafness a disability. All disabilities require inner strength and develops character. I'm not speaking for Deaf people who don't think of their Deafness as a disability. (I won't debate whether Deafness is a disability, I'm not Deaf, I'm deaf.) Being Late-deafened IS a disability for so many, many reasons-- but mostly it's because you lose the ability to communicate in the language you grew up with. If you grew up Deaf using ASL, maybe it's not a Disability. I don't know. I don't care. I'm late-deafened.

So getting that out of the way-- I'm going to back up. Any time a person is part of a minority, they end up in the uncomfortable position of being stereotyped and judged by others, and sometimes having to speak up for their rights. Though it IS quite normal to be black, or Jewish, or blind, or Gay, or deaf, the rest of heterosexual white, Protestant people believe you are "abnormal" when they find out you are part of a minority group. I can say this with some authority because I am a WASP. Disabled (deaf) = abnormal to the "normal" people. Unless there's some outward sign of your abnormality, the information that you're different can either irritate or rock their worlds. As a deaf person, I never know what kind of response this information will elicit, but you can bet there WILL BE some kind of reaction. No one ever just says, "Oh?" The trick is to convince them that yes, I AM abnormal, but in a normal kind of way. . . sort of.

If you're a shy and private person who used to be "normal" like I used to be, telling people you are no longer "normal" can seem awkward. It takes practice. Timing is everything. I used to stand in front of the mirror practicing my posture while delivering this information. I thought it was more graceful to stand proud. Katherine Hepburn would have stood proud and I always admired her. Eventually I learned to joke about it. This is what I mean by character development. I have an entire slew of jokes now. It's a strange thing about disability, but I have learned that OTHERS are uncomfortable when I tell them, so it's better to put THEM at ease. So yeah-- it's good to stand tall and above all to look comfortable and even joke. You never, ever, ever want to look embarrassed, because the others will then feel really uncomfortable with your disability.

What I used to have the most trouble with when announcing my disability was sometimes I felt like maybe it looked like I wanted special treatment or sympathy. That couldn't be further from the truth. The LAST thing I want is sympathy or special treatment-- other than I really like everyone to treat me special. This is why jokes are so handy. It takes practice. When do you tell people? Right away? Not right away? How do you tell them? . . . It all depends on the situation. There's no pat answer. You have to wait for the right opening. But it must be done, and it must be done well. Because if you do it the wrong way, then you risk making the other person uncomfortable. You want them to laugh so they won't feel sorry. But you don't want them to feel uncomfortable about laughing. You can't just blurt it out.

I've been lucky. I've been blessed to know some special people. I keep a mental list of people who have changed my life. I was going to list several people I know in my community who have various disabilities. Three are in wheelchairs with limited movement of hands, legs and inability to talk well. Some are disfigured, some are mentally disabled. Then I realized if I started listing people, the blog would become way too long because there are too many people to list. These people have taught me things about managing disability, and life in general. Sometimes I think God set them right here for me to meet so a light would go on in my dim little brain. But mainly what I came to realize years ago is a lot of people live really hard lives and they live their lives far better than I do. And I'm in awe. The inner beauty that shines through. The poise, grace, courage and aplomb it takes just for some of them to get up out of bed --- and then they smile-- at me. I feel lucky to have known people like this.

Mike mentioned in his vlog that most of us will become disabled someday. And that's true. Statistically, 7 out of 10 disabled people weren't born that way. Being healthy is only temporary. One out of three people over sixty-five develops hearing loss. We're all on our way to disability. As one friend with MS put it, the only difference between us (those who are already disabled) and them (those who aren't) is we already know what we're dealing with. We're used to being "abnormal." For the rest of them, disability will come as a shock.

I truly don't mind being deaf. Sometimes I do miss hearing things. Especially music. But there are worse things. WAY worse things. Like having both your parents and your dog die, getting cancer for the second time, and your husband announcing he wants a divorce after 25 years of marriage all within six months of sending your youngest child off to college. That happened to my friend Dar four years ago, and her life couldn't be better. Yet, I do not mind being me and I'm sure she feels the same.

Lets Stop Bein Crabs

The only alternative to coexistence is codestruction.-- Jawaharlal Nehru

Yesterday I left this comment in John's blog, Children of the Eye. I've modified it somewhat.


"I would like to suggest that someone needs to clarify some rules of respect (within the d/Deaf/hh community.) I realize we can't have a d/Deaf/hh police. We'll have to take it on ourselves to monitor our own comments and maybe talk to our friends when they speak out of line.

1)NO deaf/Deaf/deaf-blind/HH person should ever criticize another deaf/Deaf/deaf-blind/HH if their English skills are lacking when that person makes an effort to subtitle his/her vlogs or writes a blog or transcribes a vlog. This is unproductive and only serves to divide our community.

2)Likewise, no deaf/Deaf/deaf-blind/HH person should criticize another for having poor ASL skills –especially if that person is late-deafened or oral deaf and grew up without the benefit of ASL — because criticism is unproductive and only serves to divide our community.

3) No one–deaf/Deaf/deaf-blind/HH/oral deaf should criticize anyone’s speech. Again this is unproductive and only serves to divide our community.

4) Let us recognize that people within our community may prefer to communicate differently. Some prefer ASL, some prefer to cue, some prefer to speak orally. Our preferences for how we communicate involve many factors. Often communication choices were made for us when we were small, or in the case of late-deafness, lack of exposure to the D/deaf/hh community made it difficult to become fluent in ASL. The preference or ability to speak has nothing to do with being “uppity.” Our reasons for speaking are personal and varied, just as our reasons for NOT speaking. It is simply how we have chosen to manage our d/Deafness or hearing losses within our own personal environments.

5) Let’s recognize that speech has nothing to do with intelligence. Writing has nothing to do with intelligence. The fact that someone grew up hearing does not mean that person thinks he or she is better than everyone who uses ASL or can’t speak and/or write well.

6) Let's realize that we DO share many common bonds. We need to make it our goal to build on what we have in common in order to strengthen the D/deaf/HH community.

Can we all just RESPECT each other??"

It's bad enough when Hearing people don't respect us. Personally I think it's despicable when we don't respect others within our own community. Hurtful behaviors such as should never be tolerated against our own.

To be honest I understand why some of you don't want to write, transcribe or caption your vlogs. I get it. People have laughed at your writing and made you feel like idiots. I understand this. You wanna know why? I'm scared to death to ever sign in front of any of you-- because I'm a beginner. I'm afraid people will laugh and think I'm an idiot. And guess what?? Some of you have criticized others whose signing skills weren't what you thought they should be, so my fear is not completely unfounded. How do you think that made me feel as a beginner when I saw some of you criticize another beginner? I felt sooooooooooo discouraged. I felt like I would NEVER be good enough at ASL to suit some of you, and maybe I should just throw in the towel now instead of making a fool of myself.

Respect goes two ways.



That old crab theory. . . Someday we'll all have to start acting smarter---as a group.

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)

A Message to Deaf Vloggers

"If all vlogs created by hearing people have subtitles, then I will add them to my vlogs.I guess it is all depends on who you want to target with your vlogs. For me, Deaf community and ASL users. I guess it's matter of preference here." Unnamed Deaf V/blog Commenter


Five Things I Wish You Knew--

1) It bothers me that hearing people don’t caption their vlogs too.

2) I wish I knew ASL better, so I wouldn’t need to ask you to caption your vlogs.

3) You sign too fast for me, and I want to know you.

4) While I've been losing my hearing a long time, I haven't been at this level of silence very long. I'm still adjusting.

5) I want to learn from you.

Can the "Culture" Argument Be Applied Equally?

Today I came across a dvd I'm sure many of you have seen. Maybe some of you are even in it for all I know. . . haha! It's called The Sound and Fury. I watched it several years ago with mixed feelings. Seeing it again reminded me of a blog I read recently -- Cochlear Implant On-line. Rachel, a young woman who was implanted at age two said one reason her parents decided to go through with the cochlear implant, rather than teaching Rachel ASL was because her parents were not deaf and didn't know ASL themselves. If they had wanted to teach Rachel ASL, they would have had to learn it themselves first, and the ASL would have been a second language to them. She explained how ASL was not their culture. She then used an analogy of American parents who adopt a Chinese baby. Adoptive American parents of foreign children usually teach their babies English because they live in America, she said.

Rachel's mother Melissa then commented in Rachel's blog there were additional reasons. They HAD in fact explored the pros and cons thoroughly, then decided a cochlear implant would offer their daughter the most opportunities in life. You can read the entire blog here. I'm not judging. I might have done the very same thing myself 20 years ago if faced with the same options. I don't know. I'm not sure what I would do today. It's no longer my decision to make, since I'm past the age to have children.

I thought Rachel had a valid point. Parents normally raise their children in the culture they live, not the culture the child came from. In the case of Deaf children, the vast majority are born into hearing families.

However I saw some holes in her analogy. For example, adopted Korean children often go to Korean school or meet with other Koreans to learn about their culture and country. Also adopted children from other countries are hearing and can learn any language, where as Deaf children are Deaf whether they have a cochlear implant or not. They're still Deaf in many situations-- at night, while swimming, water-skiing, snorkeling, taking a shower, when the batteries die or the implant malfunctions. Even though a piece of technology helps them hear for awhile, they are still d/Deaf. No matter what country you live in, it doesn't change the fact you can't hear in those situations.

I had completely forgotten about Sound and Fury until I saw it in the check-in bin today, while working. For those few of you who don't know what it's about I've copied amazon.com's brief synopsis here--

Amazon.com
You might expect that the cochlear implant, a device that can give deaf people the gift of hearing, would be embraced by the deaf community. Josh Aronson's Sound and Fury, a compelling and often devastating documentary, tells a different story. Two brothers, one deaf and one hearing, grapple with a decision concerning their deaf children, and the debate that rages through the extended family turns less on technology and medical concerns than social politics and culture. The deaf parents of a school-age girl fear what the implant would do to her unique identity, while the hearing parents of a toddler see no question at all. Aronson gives all sides their say, but ultimately the increasingly angry arguments reveal prejudices and fears from both sides and split the once-harmonious family, much like they have split hearing and deaf communities across the country. --Sean Axmaker

The first time I saw it several years ago, I thought about it all night. When you're hearing, the argument that "Deaf isn't MY culture seems perfectly sane." Of course. It's hard to learn a second language. How can you teach a child ASL if you yourself don't use ASL?

But when the tables are turned and there are two Deaf parents with a Deaf child who say, "Hearing isn't MY culture, why should I implant MY child?" they have the same argument, don't they?

Worse, because success with an implant depends on AVT, it seems like a quite a hurdle for Deaf parents to cross with their child's oral progress. If a hearing parent with working hands can't learn ASL, I wonder how a Deaf parent with non-working ears could be expected to help a Deaf child learn to speak??

And still-- many Hearing people I've discussed this movie with don't quite understand. They think you can just implant a kid and then they're hearing. Praise the Lord! It was clear in the movie the grandparents of this family didn't understand. They put so much pressure on their Deaf son and his wife to implant their granddaughter.

All I can say is it's sad the way Deafness sometimes tears families apart so much. I see the definitions/labels tearing a community apart in here. I don't think there are any right or wrong answers to the cochlear implant issue. We all have choices to make and God knows we each have to live with those choices -- right or wrong. Hindsight is sometimes best. Let's try to be more gentle with each other as we move along into our own unknowns.

ASL Practice With My Husband

My husband and I took a couple beginning ASL sessions together two years ago, then he forgot nearly everything. He’s busy. We didn’t practice enough. I have deaf/HH friends who know a little sign, so I practiced with them and advanced more quickly, then he decided to drop out and I took more classes. To be fair, he isn’t a stupid man. He was fluent in German when we met, and he has taught himself French and Spanish since then. Normally he picks up languages quickly.

Now I’m taking ASL at the local community college, and finding I need to practice more often. So last weekend I asked him to help with my ASL vocabulary. Also, I thought maybe if he helped me practice he might pick up a few words. Sound like a good plan?

Breakfast seemed like the right time. I asked if he remembered the sign for bacon. We learned that before. He didn’t remember. I showed him.

“Really?” he asked in surprise, “Why are the fingers sizzling in an H instead of a B?”

“Whoa, great question!” I thought smiling. So I explained how the H looks more like a thin strip of bacon whereas the B- hand doesn’t.

Then I asked if he remembered the sign for coffee.
He made the sign for making out. I snickered and showed him the difference between “making out” and “coffee.”

Then I showed him “syrup.”

“Not to be confused with gas,” I said.

“Gas?” he piped up , “Which kind?”

“The kind you pump.” I showed him my fist. This is the tank, and here’s your spout. My right thumb became a spout.

“Oh!” he smiled mischievously, “How do you sign the other kind???” Men are just little boys in big pants, I thought to myself. Didn‘t my mom always say that?

I only just recently learned that “gas” sign. “Weellll,. . .” I made my hand into a fist again, “You see this fist can have another meaning. It looks like, er. . .an . . .something at the other end of your body. . .that can be offensive.“ He smiled broadly, as I traced around the index finger and thumb of my fist. He understood. Good, I thought.

“In fact,” I went on, “you don’t ever want to do the gasoline sign, stick your thumb ALL the way in, then pull it out with a jerk while frowning at someone or pointing at them. That’s bad. But the other kind of gas sign is. . .well, . . . you can make it look like air is coming out of your fist (which represents the other end) by filling up your cheeks with air, then pushing quick puffs out of your mouth while spreading your other hand out over the obscene part of the fist, OR you can just hold your nose.” I demonstrated. . .

“Why is it bad to. . .?”

“Nevermind,” I cut him off.

Next, it was time to practice. I’m terrible at lip-reading random words. Who isn’t?? There’s no context.

“mmmppfff” he says.

“What?”

Mmmmpppfff” he emphasized.

I still didn’t get it.

“MMMPPPPFFFF.” he said it louder, moving his lips in slow motion.

“Sorry, I’m NOT getting it.”

“You know--MPF!, MMPPFF!” He said in frustration.

“Can you fingerspell it?”

He thought and paused as he formed each letter carefully. I’ve been told by ASL teachers to be patient because man fingers aren’t as nimble as female fingers. I sat. . .waiting. . . patiently.


Then I was confused. “S-t-r-u-n-k?” I guessed.

“NO!” he gasped in frustration. “I forgot “tht-- what’s THT?!?”

“tht?. . .ummmm” I thought hard.

Moving on, we proceeded down my list of vocabulary words. Several chapters worth. Each time I didn’t sign something exactly as it showed in the book, he’d correct me.

“Shows here TWO hands.”

“Yeah, yeah. It’s OK to do it with one.” I would assure him.

“That’s not what it shows.” He'd argue.

“Well, I’m telling you it’s OK!”

“Look. YOU did THIS, and the picture shows THIS! He would hold up the book. “You did it WRONG.”

“NO. I. DIDN’T. Deaf people sometimes use one hand because the other hand is busy. They don’t ALWAYS sign everything exactly the way it shows in the book!”

“Well, I’m just telling you so you’ll know. . .And your other hand WASN’T busy! Do you NOT want me to say anything if you do it the wrong way? Because from now on, every time you make a mistake I just won‘t say anything. . .if that‘s what you want . . .”

(sigh)

Then he signed a sentence. “You, me, make-out.” Clear as day. His eyebrows moved up and down suggestively. And another sentence . . . “I horny.”

This was no accident. We learned “horny” a couple years ago in ASL after a German woman accidentally told the entire class how horny she was. “Horny” happens to be one of the few signs my husband has never forgotten. Why? He’s a man.

I adore him, but he’s a lousy study buddy. I don’t get much ASL practice at home. I need Deaf support.

Thank you Mishka

I realize your recent blogging has been to examine implants for children, but it has influenced my decision not to go through with an experimental cochlear surgery.

As many of you know, I went for a cochlear implant evaluation last November. Though I don’t hear speech well, I don’t qualify for a regular implant because I have good low tone frequencies. There’s a new, less invasive type of implant in trials called a hybrid, which only has a ten-inch long electrode instead of twenty-four. Because of the shorter electrode, the cochlea remains relatively in tact and residual hearing supposedly isn’t lost.

For those unfamiliar with this new technology, here’s an article explaining in more detail what it can mean to someone like me with good low tone frequencies.
http://www.hearingresearch.org/Dr.Ross/Implants.htm I’ve pasted a couple of relevant paragraphs here.

"Ski-slope" hearing losses are a common occurrence in our clinics, and they always present a hearing aid fitting challenge. Because the person may have relatively good low frequency hearing, it is necessary to ensure that over-amplification of the low frequencies does not occur. Because the hearing thresholds in the higher frequencies are so poor, it is difficult for a hearing aid to provide aided audibility without producing unacceptable distortion or discomfort. Furthermore, as some recent research has revealed, the cochlea hair cells that respond to the high frequencies may actually be missing (cochlea "dead spots"). Amplifying these areas may be more than useless; it may actually be counter productive. While some of these people may obtain some help from a hearing aid (at the lower and middle frequencies) significant hearing problems almost always remain.

Traditional cochlear implants have rarely been considered an option for people who fall in this category. Almost always, the insertion of a long electrode into the cochlea results in the destruction of the surviving hair cells. Perhaps some people who elect this route would wind up better off, even with the loss of their low frequency residual hearing, but then again perhaps not. It is not a chance that many people are willing to take.

I should add that testing phase two for this hybrid closed last fall in the US, and we’re currently waiting on the FDA to approve testing phase three, which may happen sometime this spring if all goes well. I met criteria for phases one and two. Because the FDA hasn’t yet approved test three, I was told there was no guarantee that I would qualify for phase three. The FDA had the prerogative to change test guidelines. However, at this point there is no reason to believe they would change criteria, so I am on a wait list.

I had some initial qualms when I learned I met the criteria. First of all, a small part of the approval process was based on whether one benefits from hearing aids. My hearing aids are nearly eight years old. Though my aids were state-of-the-art when I bought them, the audiologist who administered my test suggested I might be happier with new hearing aids because several advances have been made in the past decade.

Nevertheless, the audiological evaluation took two hours and was more thorough than many I’ve been through, however not the MOST thorough I’ve sat through. I’m not sure how to put this. I picked up on some vibes from the audiologist. I really didn’t think she wanted to add me to the wait list, but the surgeon was more than happy to. I might be wrong about that. I’m an intuitive person and wanted to talk to her some more, but there wasn‘t time. I have since found out that audiologist has left. Maybe I‘m reading more into this than I should. I don‘t know what to think.
Next, I had a consult with the surgeon who performs the experimental surgery. When I asked about risk the of the hybrid, he glossed over the usual risks of surgery, discussed risks of implant surgery, and finally got down to statistics on the hybrid. Fifteen percent lose their low tone residual hearing in the first year. Considering the whole point of this technology is to PRESERVE low tone hearing, I thought that was a rather HIGH rate of failure. Then he went on to say about five percent end up with WORSE hearing than they started with. I asked about newer hearing aids, and he said I would hear much better with the implant-- if it worked. No guarantees of course.

As we left I told my husband I wasn’t sure I wanted to go through with it. He agreed, though tried to remain upbeat. I had a few months to decide, he assured. Later I said the same thing to my dad. His reaction was immediate relief. I didn’t realize how much he had been stressing over the possibility of experimental surgery.

Still. . . I wasn’t sure I was making the right choice. I want to hear. My work is suffering because I deal with the public on a daily basis and I rely on lip-reading with my hearing aids. I hate my hearing aids. They‘re uncomfortable and I have a lot of sound distortion. My hearing is still declining. Anyone with an ongoing hearing loss understands the constant struggle. You’re always adjusting to new lows and readjusting. There’s fluctuation. Tinnitus comes and goes whenever you have a major drop, which also comes and goes. An implant would mean stable hearing on at least one side.

I want to say in NO WAY do I wish to sound as if I'm judging others for their decisions to get a cochlear implant. We're all different with different needs, different bodies, different life experiences. I'm looking at EXPERIMENTAL technology here. If you're a parent of a Deaf child, I can't judge you. I haven't walked in your shoes. My children are hearing. Because of my own deafness, I believe I would have enjoyed raising a Deaf child. Would I wish progressive hearing loss on any of my own children? NO!

For the past several years I’ve been treated by my family doctor, an ENT and a neurologist for excruciating migraines and sinus headaches. While several friends and relatives have suggested maybe the migraines are caused by stress of hearing loss, my neurologist believes the migraines are not psychological. That's OLD science, he says. Most migraines are caused by biological swelling within within the brain. In my case, they are possibly related to sinuses and allergy or an old neck injury.

After reading Mishka’s articles, I realize getting an experimental implant surgery would be adding more fuel to the headache fire. More than a few implantees admitted to Mishka that headache problems resulted from faulty mappings. I’ve seen examples of this first hand myself-- people I know with implants holding their heads in wincing pain. One person I know has had horrible electrical pain running down one side of her face from a faulty electrode. Another I know has been living with cochlear failure for months. I've heard horror stories of testing that rivaled childbirth.

The thing is-- if you read the article it all sounds pretty rosy, doesn’t it?
Then yesterday I went to see my sinus ENT for the first time in several months. Glancing over my chart, he saw the report from my visit to the Cochlear research center last November.

“What’s this all about?” he asked.

.
“Experimental Hybrid Cochlear Implant.” I said.

“EXPERIMENTAL? BE CAREFUL WITH THAT.” he warned.

"I'm not doing it." I told him. It wasn't until that moment I realized I had made up my mind.

I’ve always believed in fate and messages from angels. Someone’s trying to tell me something. Thanks Mishka. You're an angel.

SEX BUNNY ADVICE

After reading all this blogging hullabaloo about Deaf Sex Bunnies last Saturday night, I found myself reflecting on romance, sex, porn and the differences between men and women. I'll back up a little and confess I became hopelessly hooked on opera decades ago when my hearing wasn't as bad as it is now.

What a lot of people don't realize is how visually stimulating opera can be. The stage sets are always changing. Furniture moves, walls are added, floors are raised and lowered between scenes. A couple years ago, when I went to see Macbeth, the walls bled! Lights, shadows, colors convey a mood. The choreography is lively or graceful, and the costumes dazzling. The acting is way more dramatic than Hollywood acting. (Yes--I'm going to talk about sex-- I promise.)

Finally, because opera is usually (not always) sung in a foreign language most metropolitan productions are subtitled, so I don't have to ask for extra accommodations. It's the one time I can just be part of the crowd without feeling deaf. 95% of the audience doesn't understand the story line without reading it either. If you're used to watching captioned TV, it's a breeze-- especially since they take forever to say one simple line because they're singing it, and they repeat it fifteen times.


Sunday's production was Pagliacci by Ruggero Leoncavallo. An unusually short opera that began with a sweet erotic love scene, it included a rare circus performance in the second act, then ended with a sudden double homicide. All in all, a fairly typical story line, except the circus act. Neither composer or opera was well-known to me, which was a treat because I've seen most all the popular operas at least twice now. However, I learned a bit of dirt about Leoncavallo later-- that he had once been accused of plagiarizing, since he wrote an opera titled La Boheme that was basically the same story as Puccini's. It was never proven, but is rarely performed today. (The sex part is coming up! Be patient!!)


Opera was considered racy in its heyday. In earlier times, women weren't allowed to act or sing on stage, so males had to play the parts of women. Castrati (males castrated before puberty) with high voices dressed in female costumes, and sang all the soprano parts on stage. It was considered an honor to be chosen to be castrato, even though it meant painful sexual mutilation at age ten. Highly paid and valued, they were pampered, spoiled, demanding, fussy and difficult. Opera parts were written specifically for castrati, whose voices were unique in their range. The practice of castrating little boys for opera finally ceased in the early 19th C. No one alive today has ever heard a castrato sing. Ironically today's operas sometimes feature women dressed up as young males to play former castrati parts, which sometimes have been tweaked a bit to allow for soprano voices, since castrati no longer exist. It doesn't matter to me because I can't tell the difference anyway. (Obviously I don't attend the opera for the music, though I can hear a good share of the baritone singing and many of the base instruments because of my good low frequencies.)

You might think it affected their love lives, but going under "the knife" benefited the castrati in love. Because efficient birth control was lacking, castrated males were in demand. Upper-class married women whose husbands left town for extended periods enjoyed the services of castrati. Wealthy unmarried women -- perhaps "old maids" and widows-- also depended on castrati services. (Realize "old maids" and "widows" could be all of twenty-three in the mid- 18th century.) The use of Castrati ensured no messy unwanted pregnancy. Love affairs, rolling around in the sheets, enjoying a boy toy-- this is nothing new in the 21st C. Woman have always loved sex and and have been in touch with their sexual side since before Cleopatra. (No-- I would never, ever, ever WANT a castrato! Thank God for modern birth control!! The SEX TALK IS IN THE NEXT PARAGRAPH)

I had to laugh at the suggestion some men recently proposed in a blog about "Deaf Porn" -- that porn could actually be a "good thing" for women because it might "help" them enjoy their sexuality. What?! Could they be that clueless? If you are a guy reading this, I hate to tell you, but if your woman doesn't like sex, it's not HER, it's YOU. Get a clue! She LIKES sex, just not with YOU.

We aren't that complicated. Shakespeare got it right with Romeo and Juliette. Wooing a woman is all about romance and chivalry. That's why groups of us go to operas to salivate over Rodolfo in La Boheme. Put those porn flicks AWAY and pick up a chick flick for once! Practice what you see THOSE guys doing. Notice how tenderly Roldolfo treats Mimi. Act like Rodolfo or the Flying Dutchman, or even Superman. You might be surprised by how your woman starts expressing her sexuality. (No you don't have to fly!) What every woman loved about Superman was he cared enough about Lois Lane to be there when she needed him EVERY TIME. It was never about his super powers. Clark Kent simply missed the boat! He was always too busy in that phone booth when she needed a man. Two words. Foreplay = Romance. Trust me. I'm a woman. I know way more about it than a bunch of guys who make porn.

Do I have to love deafness to accept it?

The concept of self-acceptance and Deafhood has been tossed around quite a bit lately. Many have differing opinions regarding what this means to Deafness or deafness. Does it mean you need to love being deaf? Or does it mean you merely need to accept deafness? What does it mean to accept deafness if you don't love deafness? How can you love yourself as a d/Deaf person if you don't love being d/Deaf?

I have come to believe self-acceptance or self-love should not depend at all on our physical abilities. I believe anyone who has lost a sense or become disabled late in life may come to the same conclusion. I am not a lesser person because I lost my hearing. I'm still me. If I gained my hearing back, I would not be a better person. I would still be me. I am me with or without my hearing. The same logic applies to a born Deaf person. He or she would not be a better person if he or she could suddenly hear. Neither Deafhood or "Hearinghood" is something to be celebrated. We are all who we are. Our abilities to hear have nothing to do with who we are. However, we all may wish to celebrate our own individual wonderful journeys through life, whether we can hear or not. There is no doubt a d/Deaf journey can be as exciting and fulfilling as a hearing one.


Taking this one step further, I believe self-acceptance cannot be attached to any ideal physical measure of being. Because the physical body is prone to change, self acceptance must be come from within. Intrinsic values are the foundation of self-acceptance, not extrinsic values. Just as perfect hearing is nothing to celebrate, so is Deafness nothing to celebrate. How we look, our weight, beauty at a certain age, flawless skin, our height, our hair . . .If we live long enough-- it all goes. It's better to love ourselves for who we are inside rather than how we look, how well we hear, see, walk, and so on. Our bodies fall apart over time. Our physical bodies are impermanent.

Other impermanent values are status, identity, reputation, job, money, sports performances, health -- the list is endless. . . Even the level of education we've received loses its importance over time. Those who base self-acceptance on impermanent values remain in constant struggle to maintain self-acceptance. There is always someone who makes more money, has a better job, is in better physical shape, has nicer kids, plays a better game of golf, owns a better car, has a bigger stamp collection or a prettier garden, a cooler blog. . .etc. While maintaining one's health is a worthy goal, the fact is we are all born with a certain combination of genes that leave one prone to health conditions others may not have to worry about.

So you might ask-- What should we base self-love on if not our accomplishments, what we own, or physical attributes?

The truth is others do not love us for our cars or our beautiful gardens, and our stamp collections. Those who "love" us for beauty don't love us, they only love the idea of people seeing them with us. It's intrinsic value that makes each of us special and lovable. That perfect ball of combined peculiarities that creates your unique essence. The fact that maybe you sleep with one eye half open, or you always only hiccup three times then it's over, and Brussels sprouts make you truly gag and there's a cute story about how you got lost in New York City when you were only three, or that everyone LOVES your popcorn because you slather it in butter. Really!! It's silly, but that's what people love about you, or it's some other thing just that silly. I've grieved and I've seen others grieve. No one ever says, "He had such a GREAT car!" when they're grieving. They say things like, "Remember how he used to vacuum the carpet in such perfect lines, but always missed under the coffee table?" or "Gawd, how she loved those ugly dancing shoes--do you remember?"

Self-acceptance should be rooted in the principles we live by. Some common values might be service to the needy, honesty, simplicity, environmental awareness, faith in something-- whether it's Jesus Christ or the Democratic party, peace, mindfulness, spreading joy, teaching others, searching for truth, not eating anything that has to be killed . . . and so on. These intrinsic values are not impacted by life circumstances. When self-love is based on ethics, ability to accept self remains in tact.

Deaf and deaf people currently have many opportunities of focus that may promote communication, unite and strengthen their communities. We can choose commitment toward better understanding of each other. Working towards unity is a wonderful way to express self-acceptance.

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!

My Favorite Place

I'm just playin' around with my pictures. This is a collage of one of my favorite places. Long Beach, WA. We often go there. The little red and yellow kite is my delta, and the rainbow colored one is a Chinese Dragon kite. You can't see the head very well, but it has a cow jumping over the moon. We also have a stunt kite my husband likes to play with, and another purple and pink delta, as well as an assortment of portable folding children's kites and what not. The little building with the flag is a place to buy fish and fresh cranberries. Weird combination, I know. . . but well, it's on the ocean and also home to a very large cranberry bog. There is some good hiking and birding out at Ledbetter State Park, which is at the very tip of the Long Beach peninsula. You cannot see them very well, but on the far right second from the top just below where I am holding a kite is a picture of a bunch of gulls. My husband was watching for a rare type one day up at Ledbetter. We usually buy fish on the way to the beach. Clams have been a tradition. Though I don't usually eat meat, I will occasionally eat a clam, because it doesn't seem like it has a brain. I have been dreaming of the beach now that Christmas is over and the New Year is beginning. Long Beach has a kite festival every August that draws people from all over the world.

A Question About Blackberries

Since a thief took my Sidekick, I will need to replace it. I might not get a Sidekick this time, so I am hoping for advice on what to get.

If you own a Blackberry, please let me know which type you have, what features you like, and also why you like these features. I would really appreciate this information.

Later, if enough of you respond, I'll publish a blog on what hard-of-hearing, deaf and Deaf people like the most, what is most popular, what features seem to be the most popular and so on--but only if enough of you respond.

Also when you respond-- if you could say whether you are hard-of-hearing, deaf, or Deaf and whether you talk with the phone, or only text, or use a loop or whatever. That makes a difference. If you don't want me to publish your response, just say so, and I won't.

Thanks!

Robbed on Christmas Eve

We were robbed on Christmas Eve. The thing that bothers me most is my husband and I have been trying to save money, so we didn't buy each other anything for Christmas this year. We only bought gifts for other people. (sigh) It seems like whenever we try to get ahead, we end up a few steps behind. I hope the people who stole our stuff really needed it.

I can understand stealing the two brand new winter coats from my trunk. Brand new too! $300.00. I was going to take them back. I couldn't decide, then in the meantime my mother-in-law bought a new coat for our son. I would have liked to think a homeless person needed coats because it was cold. A homeless person could use a coat since it has been snowing and so cold here, but I'm having a much harder time picturing a homeless person making use of my son's snowboarding gear that was also in the trunk -- valued at over $500.00. Luckily the board itself was in the garage. Then there was the bag with a really nice pair of curtain scarves. Do desperate homeless people need sheer window curtain scarves? I had been planning to take those back to Linens N Things because I changed my mind about the color. Another $150.00 or so. Several CD's were taken. $100.00. And finally, my Sidekick. $300.00. We've cancelled the plan, of course. Our homeowners insurance covers theft, but there's a deductible.

I've been wondering what goes through someone's mind while they're stealing from people on Christmas Eve who are sitting in church. Then today, my son said the sweetest thing. "Mom--don't worry. Whoever did this is living a crappy life." And he's right.

This is just a small blip. It is inconvenient and aggravating, but I still have my home and car and job. I can afford an abundance of food on the table all year long. I still have warm clothes to wear. I have so many clothes I'm trying to get rid of them. I have way too much stuff. I am lucky with family. Unlike other people who can't stand their in-laws, I love mine, and my parents too. I am fortunate to be surrounded by so much love-- an abundance of family and friends who are like family. My son is right. Whoever robbed us is having a crappy life, otherwise he or she would have been enjoying themselves with people on Christmas Eve-- like I was. (The above is my husband and his dad being silly. He stuffed balloons in a pair of pantyhose and put them on his head. Don't ask. . .)

Pajama Epiphany

I had an epiphany last night while sleeping. I must be kind of dim because for days I've been wondering what "deficit thinking" REALLY means. It seems I've read at least twenty-five different definitions by now and I wasn't getting it.

Earlier in the evening I had my Kundalini meditation session with Subhan-- which was was wild, but enlightening. Subhan says it all comes together when you reach three points: 1) self-awareness 2) self-acceptance and 3) relaxation.

I don't know about others, but I have the most problem with number two. I'm old enough to be aware of my strengths and weaknesses, and I can relax, but dang-- I still have such a hard time accepting my faults. In fact sometimes I even dwell on them, which can lead to self loathing.

Most the time I do not mind deafness. When I'm alone or with other deaf/HH people, it's no problem at all. But all those awkward times, like today when a lady, cursed, sighed, rolled her eyes and yelled at me because she had to repeat a question--that kind of event gets buried, then comes back as a headache, or keeps me awake at night. It hurts. It's not my fault.

On the one hand the reasonable side of me knows that woman had a problem. On the other hand, because I was working, I had to smile and remain calm and be nice to her. I would have liked to ask her if she thought I purposely developed a hearing loss specifically to annoy her at the library. I mean-- my God if she thinks SHE has it rough having to repeat three times, how does she think I feel having to ask for repeats?!?!?!?

So self-acceptance can be a hard one. Last night I worked on that while meditating and I guess it must have been rolling around in my mind while I was sleeping because suddenly I woke up in the middle of the night with the answer.

Deficit thinking is when you don't accept yourself as a deaf or Deaf person. (I'm applying this to d/Deafness, but I think it can apply to anyone.) It's when you don't accept yourself. When you don't fully accept yourself, and I mean LOVE yourself because that's what self-acceptance is, then you cannot accept others for who THEY are. In order to fully love others, you must accept yourself with all your own flaws, so you can look past other people's flaws.

In order to accept others, to be open to new ideas, technology, culturally different people, we must first become comfortable with who WE are. I hope we can all help each other become comfortable.

(top photo from flickr chicagokristi, side photo-petersblog.org/images/self-love.jpg)

Cochlear Implants for Babies??

So I've been reading Mishkazena's blog, and as usual the issue of Cochlear Implants for babies has came up again. Some feel AGBell, Cochlear Implants for babies, and a few oral deaf people who blog about the positive benefits of oral education was the root cause of all this fuss-- which finally led to John's deficit thinking/censorship outburst. Read his blog here if you haven't already. John's blog (Since the time I originally posted my blog, John has recanted. Now he says he only meant deficit thinking should be censored, not certain individuals. See Johns New Blog.) At this point I'm super confused. I don't know how you can censor thoughts. I don't mean this sarcastically. I understand there's a disconnect because John's second language is English and I'm just now learning ASL. We're all supposed to be part of the same community but we don't even speak the same language.

As a late-deafened person. I often feel like I have one foot in deaf world and one in hearing. While my world isn't always totally silent, I think I understand the daily ins and outs of deafness. To give an example, recently my kids were talking about the sound squirrels made.

"They make sounds?" I asked. I didn't know. I grew up hearing. I should have known all the animal sounds by age fifty. But life is a learning experience and I have missed a few things along the way. We don't know exactly when my hearing loss began, so maybe I missed more things than I realized. I had never heard squirrel chatter before, and no one ever mentioned it. That I'm fifty, and only just now learned animals in my yard make a noise I didn't know about floored me!! That's what deafness is all about. For me. . . Deafhood is something different for others.


Similar incidents have happened over the years. On camping trips I've learned we were near rivers or lakes in the morning. Everyone else heard it when we pitched our tent at night, but they never said anything. People knew there were beehives in places I didn't know about because they could hear the hum. My deaf world is full of wonder. There's surprise when I'm on a hike and round a bend to find a waterfall. The hearing know it's there all along because they can hear it for miles.

BUT because they are too distracted with their ears, hurrying to get to a river or an ocean they hear, sometimes they miss other things I see with my eyes. I stop and marvel at dew on a spiderweb, an unusual red bug, a pretty rock, and lag behind hearing hikers because I'm in awe of the beauty around me. Colors seem more brilliant than they did when I could hear well. Movement catches my eye with its rhythm. Sunlight and shadows wink through spaces to catch my attention. Maybe that's how I enjoy Deafhood? I don't know. That's when I enjoy deafness.

I have been deaf to many sounds most my life, if not speech-- and now I'm deaf to most speech too. I still understand the hearing world because I remember hearing. I remember the soft and tinkly sound of flowing water in the distance. I also remember the sound of leaves crunching beneath my feet. I barely remember cricket chirps. I haven't heard a mosquito since I was a very little girl, but I remember they made a high-pitched sound when they flew. So I know what it's like to be distracted by sounds. Hearing is still my "culture" even though I don't quite fit in. I have missed out on a lot of stuff after I started to lose my hearing.

I am not hearing or Deaf. I am deaf. In my perfect world everyone would sign and talk at the same time. The hearing would caption their videos and the Deaf would caption their vlogs. I would not care about sentence structure or spelling because I appreciate the time it takes to caption. I realize not everyone's first language is English. I would not care about perfect ASL because I realize not everyone's first language is ASL.

So what does any of this have to do with Mishkazena's blog??? And implants for babies??? I keep wondering about the subject of cochlear implants on babies. Have any of you personally known a baby who was implanted? I haven't. I have read the occasional news accounts of the rare implant that got infected. Circumcisions also get infected sometimes, and they are painful. Babies are given nothing to deaden the pain. I think it's a brutal practice. (If you want to read a horror story, there was a baby boy many years ago whose penis accidentally got lopped off during circumcision. A psychologist decided it would be best to turn him into a girl after that. Very, very sad, but true story!!) As Nature Made Him

I have seen videos of people who were implanted young and they seem to have better speech than people my age who grew up with hearing aids. Since I'm deaf I have asked others to evaluate their speech too. The deaf speech doesn't seem to be present. This is really great I think, because unclear "deaf speech" can be considered somewhat of an obstacle in the hearing world and may hinder one's job propects!

The reason hearing parents may choose to implant their kids is because infant language development begins early. National Institutes of Health Language Development A lag in language development can impact a child's ability to read and learn later on. We all know how important education is, especially in today's world. I honestly don't think believe cochlear implants are about "hearing supremacy" or a desire to wipe out Deaf people. They are about opportunities. I have met a few implanted late-deafened adults who can talk on telephones and I'm impressed with their hearing capabilities. I don't know if they can hear mosquitos or squirrels. Probably not. But I knew them before their implants and after, so I was able to make a comparison. The differences astounded me!!

If I had a Deaf child I'm not sure what I would do about a cochlear implant, but I AM sure the child would be taught ASL. I am not an expert on any of this. I am only a late-deafened mom who has raised three kids, and this is only my opinion based on how I see it. There are risks with the cochlear implant--yes. But there may also be many opportunities. Each parent needs to weigh the risks and oppportunities against the child's individual needs, whether the child has other challenges, and how healthy the child is. Parents need to consider their own lifestyles, their financial resources, and family support systems. There are so many factors to consider before a major surgery. Perhaps the some parents feel pressured into implanting their child and cave. It's intensely personal and we shouldn't judge them after the decision has been made. They only do their best given the information they've received.

I wish I learned ASL earlier. I wish my family knew ASL and that I had more friends who knew ASL. When you have a cochlear implant you are still deaf in a lot of situations, and the processor has to come off. Or it malfunctions. Or the batteries need to be changed. ASL makes so much sense for ALL deaf/Deaf people, especially children.

I hope we can all remain open, as I believe hearing parents need support from the Deaf community more than ever before-- and it needs to be positive support if we want them to listen.