HOLA!

I was in Puerto Vallarta just prior to the Day of the Dead  and it was fun as they have lots of festivities leading up to their holiday, which is much, much bigger than Halloween here.   The skeleton decorations seem morbid, but the Day of the Dead is not a time for evil spirits.  It’s  the day the spirits of your dead family and friends come back to participate in all their favorite earthly vices.   A Mexican friend recalls the entire neighborhood camping out in graveyards in a kind of party atmosphere when he was a kid.  Shrines are erected to the dead with flowers, candles, photos and favorite foods the departed once enjoyed.  Its roots are Aztecan, but the heavy influence of Catholicism has impacted the holiday so there is now a religious aspect involving prayer, as well.  I guess the best way to describe it would be a combination of Halloween, Memorial Day and a wake or something.  We have nothing like it here.

So anyway, the first night in Puerto Vallarta we had a tropical rainstorm.  Perry and I had to walk back to our hotel in pouring rain.  We got drenched, which wasn’t so bad as the rain was warm. As we rounded one corner, we saw a welcome sight up ahead.  A Woolworths!  There is nothing like the smell of Woolworths popcorn.  It drew us in with its tantalizing perfume –a combination of buttery bliss, new bicycle tires and Barbie hair.

As we entered I was mildly surprised to see racks and racks of Halloween costumes, just like the pre-Halloween displays of the Woolworths of my childhood long forgotten.  Little plastic jack-0-lanterns with black handles formed a pyramid next to a jumble of sugared skulls.  I did not realize that Mexican kids trick-or-treat.  Though I had seen a few paper jack-o-lanterns around town, October decorations  seemed over shadowed by colorful Aztec skeletons.

So what do Mexican kids like to dress up as?  There were a number of the usual princess and vampire costumes, and a few devil costumes– but one outift struck me as uniquely Mexican.  A Monk.   I don’t recall seeing  many trick-or-treating monks in my day, but it must be a popular get up, as there were two entire racks of them in all sizes.   I saw no Che costumes anywhere, though they were popular in the US this year.

Later a friend mentioned she had attended a Halloween party with a Mexican man who wore an overly large sombrero, carried around a large bottle of tequila and wore a wide leather strap with shot glasses across his chest the way a Mexican bandito might wear a holster of bullets.  Essentially he went as a stereotype of himself.

This made me wonder how a deaf person might dress in a way to humor people while at the same time pointing out the ridiculousness of d/Deaf stereotypes.  Some thoughts. . . Huge ears and ear muff type ‘hearing aids”, carrying around a bullhorn type thing for the ears, dressing in the shape of a big ILY hand, putting large plastic ears with heaing aids on other places of the body like the middle of the forehead, back of head, butt, belly, arms, legs, etc.  Or maybe dressing up as a ‘deaf hero’   A  person could really have fun with this.

 

 

 

Gone

I have gone away for a much needed vacation.  I’m not taking my lap top or phone.

 

Dear Self. . .

Recently I was given an assignment to write a letter to myself– not a grocery list, or to-do list, but an actual letter.  It was supposed to be like the kind of letter you would write to a child you were proud of, only you were supposed to address it to yourself and list things you were proud of.  I didn’t know what to write.  I haven’t ever done much.  I certainly haven’t done anything I set out to do when I was young.

Hearing loss can do that to you.  Actually — ANY loss can do that to you.  I have had long conversations about this with a friend who suffers with MS.  The hard truth is a lifetime of plans can come crashing down in the time it takes to snap your fingers.  Not that it’s an excuse for doing nothing– no-no.  But losing something big– a sense or your health or someone close– does tend to set you on a different course than you ever imagined.  Instead of thinking about what you’re going to do tomorrow, you think about enjoying today.  Maybe I have done too much of that.

Over the years I have spent hours playing the piano in preparation for the day I would no longer hear it.   There were times I sat by the ocean just listening in awe.  I have stopped what I was doing to hear rain on the roof knowing I might not hear it again.  I have opened windows to hear woodpeckers hammering for bugs.  I have walked in snow for no other reason than to hear the crunch against my boots.   I am glad I have done these things.  Because I was fully aware while soaking it all in, these sounds are engraved in my memory.

But I haven’t spent much time working toward any goals.  What am I proud of?  What have I accomplished?  Truth is, when I was nineteen I wanted to be a dental hygienist.  I had it all planned out.  I would clean people’s teeth, make good money and feel great about the services I provided.   But then I discovered people wore face masks in dental offices.

I couldn’t understand the guy I worked for.  His lips were covered all day.  I couldn’t understand the other assistants and hygienists.  I couldn’t understand the patients with their lips numbed, and cotton stuffed in their mouths.  I was going deaf at nineteen.

I can’t say the dental background was a complete waste of time.  I ended up  at a dental insurance company where I met my husband.  Because I was career-less and goal-less, we started a family.  Eventually I began working at the library so I wouldn’t be charged overdue fines anymore.  Basically I’ve spent my life just drifting from one experience to the next without contemplating the future much.

So.  I sat in this workshop racking my brain for something to say, something I’ve accomplished, something to be proud of.  The lady next to me wrote two pages before I could get one stupid sentence down.  Then the workshop leader asked if anyone wanted to read their letter out loud.  No one moved.  We all sat there petrified.

But up out of nowhere this beautiful young woman clumsily stepped forward pushing a walker.  It took a moment for her to get settled, then she started to speak.

“Dear Self,” she said, “I never thought I would be deaf and paralyzed at the age of 28.  You are brave and have a strong spirit. . .“

I folded my paper and tucked it in my purse.  For her, just living was an accomplishment.

Goals?  Who needs ‘em?

 

How to Educate the Hearing about d/Deaf Peoples and Culture

DP asked how we educate hearing people about d/Deaf people.  That’s the hard part.

I believe diversity education needs to start young, but with only 1 out of 1000 babies born deaf, hearing children do not get enough exposure to deaf children when young.  On top of that, many deaf children are removed from their communities to attend deaf programs elsewhere.  So hearing children grow up never meeting a deaf person, except possibly an elderly grandparent who suffers in denial and may have self-esteem issues– a sad picture.

Now that baby signs have become popular, hearing children are getting fun exposure to the concept of a visual language.  So there is that.  Also I think many teachers have begun using sign to supplement spelling lessons, which is fun for them.   Still–few children ever meet a Deaf person.

If we based an education program on what other groups have done to gain acceptance, then we need more media exposure of Deaf.  But I don’t just mean Deaf actors taking Deaf parts because there aren’t enough of those parts.  The exposure needs to be consistent.   The Deaf pepsi commercial was a great example.  We need more of those, but the commercials should not always be ads for other products.  The ad itself could be for recognition of Deaf culture and d/Deaf people.

Other Ideas–  A huge event with programs, ads, publicity, marches, parades, etc., etc.– but it should all be happy and positive, which means we need to leave the oral/ASL politics at home.  A fun educational event is not the place to protest audism.  Both deaf and Deaf have to overcome challenges.  We’re in this together.

There are ethnic parades all over the country.  Here in the Seattle area, we have Norwegian Independence Day and Chinese New Year.  Nevermind that most the participants are not really Norwegian or Chinese.  For one day they celebrate their roots by dressing in traditional costumes.  It is not unusual to see a black person wearing traditional Norwegian dress or Viking horns.  This is about unity, not authenticity.  The celebrations need to be inclusive, not exclusive.   If we were to have a d/Deaf event, for one day ALL participants should be accepted as Deaf.

My vision of this d/Deaf event– parades and a fair type atmostphere where the entire hh/deaf/Deaf community gathers to educate hearing people about hearing loss, deafness and Deaf culture.  We could have vendors with information about accommodations, interpreter and ASL programs.  Earplugs would be free to the public, as we would educate them about noise pollution.   This could be our one annual shot at exposing hearing people to the idea that normal Deaf and deaf live amongst them, so we need to present a united front and let them know we’re a large group of diverse people with many different abilities and talents.  We should appear positive, not angry.

I envision Deaf entertainment, lots of food, lots of humor, face painting, music with signers, motivational speakers with interpreters and CART, dancing with balloons, representatives from ALL deaf/Deaf organizations.  Deaf and deaf wearing costumes, ASL clowns, vendors of accommdated equipment, dogs for the Deaf.  EVERYTHING d/hh/Deaf should be represented, esp. ASL.

We need a traveling Deaf hero exhibit that can go from school to school and city to city– so hearing people will learn the contributions and accomplishments of our many Deaf and deaf heroes.  We need Deaf entertainment/speakers who go out to the public schools to educate about hearing loss and Deaf culture in a relevant way to hearing people.  In other words, the message should be “overcoming adversity’ kind of thing, so that hearing children will be inspired to succeed and also to take care of their ears.  Why?  Easier to sell to the public schools– but it would kill two birds with one stone, since the hearing children would also be exposed to a respected successful Deaf person speaking at their school.

What won’t work– anger, protests, complaints of audism.  For one thing, audism is often too subtle.  The reason anger and protesting worked for blacks was because racism was horrifically ugly.

If there should be anything to remind people of audism– possibly a silent candlelight vigil for Deaf victims of crimes perpetrated against them solely because they were Deaf, but only at the end of a very fun event.

None of these ideas are all that original but they are based on what I feel has worked to educate the public about other groups.

 

Lost My Hearing, Found A Family

ALDA’s slogan.

WOW!  So true!  So what do late-deafened/oral-deaf/HH people do at these Conventions?  About the same thing you do at any deaf/HH convention. . .

Lots of hugging, signing,  laughing, and checking of PDA’s for messages. . .

Since ALDACON 2009 was held in my hometown of Seattle I didn’t spend the money to stay at the hotel.  It would have been more fun had I stayed, but more than twice the expense. Plus I had to work two of the days four days.

Our plenary speaker was Sue Thomas of FBEye fame.  Her speech detailed her life story, then praised those who had made a difference in her life by dedicating themselves to the education of a deaf child.  She ended with a plea for the Deaf/deaf/HH communities to overcome their differences and unite.

The rest of the day was taken up with workshops about deaf rights, traveling when deaf, advocating for deaf access, communication tools, deaf self-esteem, how to deal with police and lawyers when deaf, and a three-part ASL workshop for those of us who needed help in that area.  This list is incomplete.

The second day was much like the first.  I.King Jordan spoke after the luncheon.  After telling his story he ended with a homework assignment.  He wanted each of us to go back to our rooms, look into our mirrors, then repeat the words, “I am deaf.”  His point was that you can’t deal with your limitations until you face them.  This seems odd coming from someone who says, “The Deaf can do everything, except hear.”  Limitations???  But he is right.  You have to face the fact you are deaf before you can effectively navigate the deaf landscape.

He wasted five years in denial, he said.  Personally, I wasted  twenty years in denial.  Late-deafened people waste too much time in denial, especially when the medical community makes every effort to support your fantasy of a miraculous cure.   To this day, none of my doctors or audiologists have ever uttered the words, ‘You’re deaf,” to my face.   I thank God for a deaf women who bluntly pointed out the obvious a decade ago.  She said, “Kim, when you have to read lips while wearing hearing aids, it means you’re DEAF!”  I hated her for saying that– for about ten minutes.  Then I realized she was right.

I missed day three almost entirely except for the karaoke party– and am I ever glad I did NOT miss that!  Partying with deaf people is never like partying with hearing people.  The music was so loud you could feel it traveling up through your legs, then exploding out the top of your head.  But just in case you couldn’t feel it, balloons were available for the vibrationally challenged.

Because the music was that loud it was impossible to hear anyone sing.  Half of them signed anyway– and maybe mouthed words for effect.  I am not sure.  I could see some mouths moving, but it was impossible to tell if sound was coming out, which was probably good.  Many of us danced in large, wild groups in front of the stage.  Some wore costumes.  Balloons floated about and popped occasionally.

Towards the end of the evening I saw hotel staff looking on with mixed expressions of shock, horror and envy.  It’s good to be deaf.

 

PhotoHunt: No Theme Week

So I chose. . .

Apples

 

Informal Comparison/Contrast of Deaf culture to deaf culture

OK– Again I’m referring back to DP’s blog on the Red Pill, and I hate to keep piggy-backing off her, but several good discussions are coming out of this.  Looking down toward the second to the last comment, Gamas posted a series of common Deaf cultural traits, which I will relate to ‘deaf’ cultural traits.

I will list them.

• Attention getting behavior . . . when deaf people try to get attention of other people in a room when lights fails . . . the resort to floor or table pounding.

• One more thing, hugging . . .even among people one never meets. Not all deaf people do that, but it is pretty common. . .

Gamas, sorry for cutting out so much of what you wrote, but it was a long paragraph.  In earlier comments you mentioned

• gathering in a kitchen as Deaf behavior

I mentioned that deaf people also tend to gather in well-lit areas where they can see each other face to face.  A kitchen table is perfect for that.

• Deaf people tend to  explain things, . . . and . . .they ask personal questions that is none of their business….

You also mention

• Deaf social clubs.

It’s interesting because the late-deafened share most of these same Deaf behaviors.

• The flickering lights,
• Stomping of feet, and pounding of tables
• Hugs.   We hug everyone.
• Gathering in well-lit spaces.  One additional requirement for a deaf gathering is ‘quiet’ space away from dish clatter, cooking pots and loud hearing people or music.

Late-deafened people do not tend to keep everyone informed or ask personal questions.  But it’s funny you mentioned this because at one convention when I was at a party, I disappeared for awhile.  I went upstairs to my room to go to the bathroom.  I didn’t want to announce this to everyone, so instead told them I was going upstairs with no explanation.  Later, I found out some people thought it was very RUDE.  They felt they deserved an explanation of why I left like that and gave me hell over it.  These were late-deafened, oral people.  I was taken aback.  I now announce when I’m leaving a room of deaf people and explain why.  In detail.

So I’m going to add–

• Informing people of the personal details when you leave a room or party, even for a few minutes– which is a gray area depending on who you’re dealing with, but to be safe I guess you should let others know or they could give you hell.

• d-deaf clubs.  I’m a member of three– HLAA, SWC, and ALDA.  Like you with DVTV we discuss stuff on-line endlessly, and it’s not all related to hearing loss.  We have annual conventions, seasonal picnics, events and “flings”  We’re very social.

I will add a few more oral deaf/HH/late-deaf behaviors. . .

• Trying out other peoples’ equipment.  It’s common to pass around new gadgets and equipment for others to try.  I have sat in a group and even passed around hearing aids to compare sound quality.

• Inclusion is a biggie.  If you are at a table of HH/deaf/oral deaf, everthing is repeated, signed and written for all so everyone feels included in the conversations.  No one is ignored or told, “never mind”  This means that signing between two people is rude if a third or fourth non-signer is present.  Among the late-deafened you must stop and include them.  It’s IMPORTANT.  Likewise a lone Deaf signer amongst non-signers will be kept informed of the conversation at hand through writing and clumsy signing as much as possible.
• Access.   Our clubs were built on the concept of accepting personal hearing choices and accommodating all to the best of our abilities. Rooms are FM looped, CART is ever present and interpreters provided by request for all official events.  The use of simcom is common.  Attempts to sign is encouraged.  Attempts to speak (if you speak with a Deaf accent) or clumsy attempts at signing are never, ever ridiculed.  We also make sure to provide access to those with other disabilities.
• Support.  It’s the foundation of all HH/deaf/oral-deaf clubs and goes along with inclusion and access.  Hierarchy is based on who has given the most time and effort toward advocacy and support.  Chapter leaders, State Association leaders, d/Deaf educators, and those who fight for our rights are our heroes.

When Deaf people disregard these last three rules of deaf cultural behavior, they seem just as elitist and oppressive as hearing people who criticize when we can’t hear and ignore requests for access.  These are big no-nos. 

 

Can Someone on Disability Be Self-Actualized?

AnneMarie asked, “Kim, that is what I have been wondering too. How can one can consolidate her/himself to being actualized while acknowledging her/himself being a disabled? Acceptance of disability as a condition that brings out the gift of language/culture? It’s befuddling yet I have seen more professionals on the medical side have start to seeing us to be a cultural linguistic group through use of ASL language. I will be interested to see how this all somehow balances out. I believe it has to happen if that way Deaf and HoH people can have their own positive image and ability to self actualize to their own fullest.”

I’m answering here as it seems off-subject and overly long to post in DP’s blog. On a personal level it wasn’t until I began seeing my hearing loss as a ‘challenge’ rather than a disability that I felt  actualized.  I’m not sure I am fully self-actualized as I think it’s a lifelong process.

I’m looking at this purely from a late-deafened point of view.  When a person loses hearing later in life, they lose their ability to communicate adequately in their FIRST language.  Because fluency in a second language (ASL) seems unattainable to some, the late-deafened often  see themselves as ‘disabled, while recognizing that the Deaf who speak ASL fluently may not feel disabled at all– especially those who have gained social fluency and success in a career with other Deaf.

Hearing loss later in life is often accompanied by some other disability.  For example, chemotherapy is known to cause profound hearing loss.   Intravenous antibiotics given in a hospital for serious life-threatening infections, and sometimes an infection itself can lead to loss of hearing.  Serious head injury may cause someone to lose hearing and simultaneously affect thinking or cause paralysis.  Stroke victims experience hearing loss.  MS, Menieres, NF2, Arthritis, AIDS, Cardiovascular disease, high blood pressure, kidney disease, diabetes and a number of other less common conditions can all cause hearing loss.  For many, the hearing loss is part of a bundle of disabilities.

When someone who has been hearing a long time loses hearing they can experience depression, panic attack, GERD, and other stress related symptoms until they learn to cope.  Depression and panic attack can be disabling.

So it is perfectly understandable that a late-deafened person may see his or her hearing loss as ‘disabling’ while acknowledging that others may be Deaf and not feel at all disabled.

Whether or not you see yourself as disabled is personal, but I can say that I think “challenged” is a far better word choice.  When a person is ‘challenged’ it means he or she has hurdles to overcome.  The possibility of achievement is within reach, and the achievement greater because of the hurdles.  Disability carries a negative meaning.

I have nothing against anyone receiving a monthly disability check.  I trust that the government has it all figured out.  However if a person is disabled enough that he or she can’t work, then it seems reasonable to admit that their condition is ‘disabling’ .

As for self-actualization and getting a disability check, I think it’s a question of productivity and using one’s potential to the best of his or her ability.   I personally know a very talented person who can’t work a 9-5 job, but she is artistically gifted.  I would say she is both disabled and self-actualized.  Self-actualization can mean many things besides financial or career success.

 

The Gradual Shift Towards ASL in Oral Deaf Communities

In my previous post I included a chart that showed the ages at onset of deafness.  Three-fourths of all people who are deaf lose their hearing after age nineteen.  One interesting outcome of deaf mobilization has been the gradual acceptance of sign language as a viable form of communication for those who lose their hearing late in life.

When my hearing loss was first diagnosed, HLAA (founded in 1979) was in its infancy.   There was literally no place for someone with late onset hearing loss to get support or help from others.  At first HLAA focused on oral deaf people whose accommodation needs were different from the ASL-deaf.  At that time the ADA Act was being written.  HLAA’s mission was to ensure that oral deaf would not be forgotten.  For example, though we cannot hear, ASL interpreters are not as helpful to us as captioning.   HLAA’s goal was to advocate for those oral deaf whose first language was English.

However I think they developed tunnel vision in the process of focusing too much on certain accommodations to the detriment of others.  They became a bit exclusive and some oral deaf got lost in the shuffle.  I recall an oral deaf friend who showed up at an HLAA meeting signing.  Signing was her only option since hearing aids didn’t help and cochlear implants had not been invented.  She was told she was ‘too deaf’ for HLAA!  Those were the early days.

When ALDA came on the scene, their motto for communication was “Whatever works”  Late-deafened signers were welcomed from the beginning, and HLAA followed suit.  ASL vocabulary even became part of the program for my local HLAA chapter.  Just a few words each month would be taught.  Club members found it interesting and useful.  It is common today to see people using sim-com and ASL at all HLAA and ALDA functions.

One thing I’d like to point out is that both HLAA and ALDA welcome those who were deaf from birth.  There is a common misperception among oral deaf that HLAA or ALDA might turn them away because they were born with hearing loss.  While it’s true the majority of oral deaf are late-deafened, both organizations are welcoming of ANYONE who wants to join their cause.  I suspect this is because their main focus is on advocacy not culture.

But also, many people fit into a gray area.  Lots of people grew up with some mild hearing loss, then became profoundly deaf later.  Are they born deaf or late deaf?  Who cares?   Or perhaps you were born deaf, but you’re married to a late-deafened individual, and maybe one of your kids is Deaf while the other is HH.  Or maybe you are late-deafened, but ASL was your first langauge because your parents were Deaf.

One positive effect has been that deaf people of all stripes began coming to our events.  In turn, we began to recognize that their experiences and perspectives are a great asset to our community.  Comfortable in their own deaf skins, they are wonderful models of self-actualization– something the newly deaf struggle with as they come to terms with the internal identity shift from hearing to deaf.  The born deaf often exemplify what you CAN do as a deaf person, instead of what you can’t.

Additionally, the born deaf sometimes blossom in our presence as they find themselves in leadership roles amongst former ‘hearing people’ looking for answers.  Here, we look up to them as people with information and expertise.  It’s natural for them to pass on a few signs.

So what I have personally seen over the past thirty years has been a gradual blending of people who were once polarized within the oral deaf community.   We’re recognizing that we ALL need accommodations whether it’s an interpreter, CART, a dog for the deaf, or an FM system.  Being deaf is no longer about dividing people according to their accommodation needs.  The ADA was passed twenty years ago.

I can’t speak for the Deaf community, but it sounds like the walls are coming down there too.  With that comes greater acceptance of ASL in the oral deaf communities.

 

Self-Actualization in the Real World–A deaf View

Lately there has been a lot of discussion about “deafhood” and self-actualization.  See Deaf Pundit’s blog.

Below is a chart of age at onset of biological hearing loss taken from the Gallaudet website.  You can find the raw statistics here.

Three-quarters of all deaf people lose their hearing after age 19.  I’m not sure if I fit in that spot or in “unknown” or ages 3-18.  My hearing loss was diagnosed at 19, but it began much earlier.  No matter.  My first language was spoken English and I am biologically deaf.

Presumably any North American who became deaf after age 19 would be fluent in English and would have a hard time picking up ASL, or changing their entire lifestyle in order to fit into the Deaf community.  Yes– I realize it can be done– but the bigger question is why would someone want to?

The older one is at age of onset, the more hearing friends one has.  Unless you’re trying to escape your real life, the best plan of action is to accept the medical model of deafness, get good hearing aids or a cochlear implant, join a deaf advocacy group for empowerment and support– then move on.  You may or may not decide to learn ASL, depending on your interests, relationships, and what you do for a living.

As for self-actualization, all that means is to develop or achieve one’s full potential.  That’s all.  Whether biologically deaf or not, all people seek to make the most of their assets in order to self-actualize.  For some of us, that may mean speaking.  Others may decide to work with Deaf people or for a Deaf-centered company.   I could be wrong, but collecting SSDI seems to be the opposite of self-actualization, and Paddy Ladd’s vision of Deafhood.

I realize it’s tough out there.  I know a lot of hearing people won’t give Deaf people jobs.   You have to eat.   There is nothing wrong with collecting those checks.  But please do not tell me I haven’t embraced ‘deafhood” simply because I speak and have a job working with hearing people, or because I have developed friendships with co-workers who hear.  Realize that because I speak I do not qualify for ‘disability’  Yet, because accommodations are needed, hearing people are often reluctant to hire oral deaf people like me too.

Am I an deaf audist?  No.  I’m a deaf realist.   A self-actualized deaf realist.