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. 

 

Access In The Puget Sound Region. . .

If you are deaf or Deaf or hard-of-hearing and live in the Seattle area, most likely you have noticed all the newly accessible events around town.  You’ll find captioned sports announcements, subtitled musicals, plays, and lectures, as well as ASL performances.   Additionally the Washington State ferry system will begin captioning pertinent announcements soon.

Washington state has one of the most liberally interpreted accessibility laws in the U.S., and one man John Waldo, has made it his goal to see that Seattle becomes the most accessible city for the d/Deaf and HH in the country.  I would like to call your attention to his blog that details all the latest changes on the access front at hearinglosslaw.com  Many organizations, like the Mariners and Benaroya Hall, haven’t had time to update their websites with the new information yet, so few people know about it.

As the Mariners season wraps up, you will be able to access announcements at the game with a hand held gaming device developed by Nintendo–owner of the Mariners.  Instead of using an extra reader board for captions that might have taken up valuable advertising space, the Mariners in partnership with Nintendo came up with this creative solution to access.   The device is available at a Nintendo kiosk near home plate.  Similarly the Seattle Sounders and Seahawks offer hand held devices for captioning stadium announcments–good news for my husband, an avid fan and season ticket holder, who is moderately hard-of-hearing.  Sometime this fall I hope to attend a game and will try to take pictures of the device so you can all see how it works.

In the past year, we have enjoyed two wonderful captioned musicals at the Fifth Avenue Theater.  This is something I only dreamed of doing in the past.   In the coming year,  I’ll be able to attend plays and lectures at the Seattle Rep, the Paramount, and Benaroya Hall, as well.  It seems like the world has suddenly opened up!

This article wouldn’t be complete if I did not mention that ALL Seattle Opera performances are subtitled and have been since the early 1980s.

Accessibility options are not well advertised.  In most instances I’ve had to search around on websites to find out when and where captioned events were held.  Four websites– the Mariners, Sounders, Seattle Opear, and Benaroya Hall do not have any information about it at all on their websites.  You may have to call for more information and updates.  Be sure to do that, and let them know later how happy you are with the services they provide.

It may seem like a small step when an entertainment organization offers just one accessible performance among many, or when only some of the game announcements are captioned, but it is a step in the right direction.  With positive feedback, they will soon realize the many benefits of offering services to all.

 

Sorenson Fixed! YAY!

I’m so excited.  I finally got my Sorenson working again.   Last night a  Sorenson guy showed up out of nowhere.   He needed to give me a new number because of some new FCC regulations.  But it was strange the way he showed up so late at night.   I told him my Sorenson wasn’t working, then he tested it and said it WAS working, but I kept telling him I didn’t think it worked.  Then he assigned my new numbers, and tried to call the CIR (I do not know what that stands for but I think it meant he was calling an interpreter because that’s what he did next.) and then the interpreter told him she wasn’t getting my connection or something. So he had to put in a new router that would piggy back onto my old router.  He’s coming back tomorrow and then everything should be all fixed!!  And I will be able to call anywhere!!! 

Which I can already do with relay, but it will be better if I don’t have to type.  We all know what a hassle that is when you have to leave a message in someones voice box.   I have had bad experiences trying to get hold of medical staff with relay.  By the time the relay person types out the message, the machine shuts off before I have a chance to type anything back.  Then they call back, which is stupid because I never answer the phone.  They don’t leave messages because of privacy laws (and even if they did I wouldn’t hear it.)  So what happens it I call, then they call back, then I call back, then they call back. . . (sigh)  Some people use a fax, but I don’t have one.  So I’m hoping the Sorenson will work out better– because when the call back I can answer the phone and an interpreter will tell me the message. 

I have been having a lot of signing coincidences lately.  And this is a good thing because I have gotten so out of practice since I don’t know many Deaf people and none of them live around here. 

Last month a lady from HLAA wrote to ask if I would practice ASL with her neighbor who was going through the same program I went through a couple years ago, so I’ve been practicing with her.  Then yesterday this Sorenson guy showed up.  He was here an hour and explained everything he was doing in ASL, and only had to fingerspell a few things out because I forgot the signs.   I think he was used to talking to numbskulls like me because he signed very, very slowly after I explained that I was learning ASL since I lost my hearing. 

And now today I was at a memorial service for my friend who died, and it turned out my friend’s cousin was Deaf.  I saw him signing in the church with his sister who is going to school to be an interpreter.  So I talked to him for awhile too. 

It is very hard to talk in a foreign language to a total stranger, but I do need the practice, and I’m grateful when Deaf people put up with me.   I know my sentence structure is backwards, and I have  hearing brain and I’m slow.  So it always amazes me when they actually GET what I’m saying because I know I’m not signing things exactly right.    

I’m just really glad all this has happened.  I think maybe it’s a sign that I need to sign more.

 

Anonymous Audists

A few weeks ago I wrote about the letter I sent to my local movie theater.  I never heard back.  (sigh) Figures. 

 

Anyway, tonight my husband pointed out an article in our local newspaper.  Guess what?  Someone else has filed suit against theaters in the Seattle area to provide captioning.  

 

 

Here’s a link to the article.  If you read it be sure to pay attention to reader comments in the ’Sound Off’ section.  The majority of comments are somewhat anonymous since most post under a cyber handle.  I guess they feel more comfortable letting their true feelings show when hiding behind a mask.  If you’re deaf/Deaf or HH, the comments will most likely infuriate you.   

 

Just to give you a taste of it, here are some of them–

“. . .I’m not hearing impaired I’m just left handed . . .all my life I’ve had to deal with spiral notebooks (and grades lowered for handwriting). Pianos and Guitars (made for right handers) as well as everything else in the world – which is made for right handers. Insurance companies actually say that left handed people die sooner becasue we have to react ro a right handed world – my life expectency is 5 to 7 years shorter according to them. But I don’t see all of us left handers sueing the rest of you because we are stuck with something we were born with… sorry. . .” 

Huh.  OK, onto the next comment.

 ”OMG… I’m going to sue cause clothing Store’s don’t have pants, jeans, etc.. any smaller than a 32 inch waist. They only cater to fat people. . .”

 

Here’s another.

“Here’s how it’s gonna work if the hearing impaired have their way:

The few that insist on their right to have their disability catered to will patronize a few movies at these theatres, then they will realize that the public theatres are not so great after all. They will soon stop attending, the few numbers that they are. The theatres will in turn be forced to fold under the expense and changing habits of our society (home theatres) and at the end of the day most people will choose to watch movies at home, which ALREADY have great captioning built in.” 

 

 

So. . . I guess he thinks most of us have never been to a movie. . . NEXT!

“I think this is just more crying from ONE MORE minority group that has needs, lets all hold hands and cry now…..”

 

Had enough??  There were 59 comments and the majority were extremely angry. Dripping with ugly sarcasm just like those above.  Wow!  I have to say I was really surprised people actually felt that way.  Where does all that anger come from?  To be honest, when I see comments like these it makes me glad to be deaf.  People like that think they’re going to be hearing, sighted, and able to walk their entire lives.  Most of them will eventually lose something if they live long enough.  I know it’s not nice, but I can’t help wishing bad karma on all of them.

 

Captioning One Theater and Stadium at a Time

Many of you know I hold season tickets to the opera.  This used to be one of the few stage experiences I could enjoy with friends and family since it always offered subtitling in English, (due to the fact that operas are sung in other languages.)  Over the past three decades many musicals I would have like to have seen have come and gone, and I’ve missed them all.  There’s no point in spending the money on a play or musical when you can’t follow the story line. 

 

Well now that’s all history!! 

 

Thanks to John Waldo, a deaf attorney working with the Washington Communication Access Project (Wash-CAP), the Phantom of the Opera was captioned at Seattle’s Paramount Theater last Wednesday night.  I have owned the cd for about twenty years.  I LOVE the music.  What a thrill it was to finally experience it firsthand!  In addition to the captions, all d/Deaf, HH people got a price break, and preferential seating close to the captions at the right side of the stage.  The seats sold out despite being on a Wednesday night.

 

I can’t even begin to describe how wonderful it felt going to something like this with Perry, my husband, just like any other couple.  Knowing I could follow the story increased his enjoyment as well.  He also found he needed to use the captions himself at times. 

 

Perry told me about a football game he’d been to in Arizona with my dad.  At that game, everything on the big screen was captioned in their stadium.  He explained how much he liked that because he often misses what the announcers say when crowds at Qwest Field cheer.  Later he wrote to the Seahawks to encourage them to caption their screens at Quest, but they never responded.  Evidently the NAD recently filed suit and WON(!) against the Washington Redskins for failure to make their games accessible to deaf people.  Way to GO!!

 

Captioning is coming one theater, stadium or lawsuit at a time.  Whatever it takes.

 

In a few weeks the Paramount will be showing a captioned performance of Spring Awakening, winner of eight Tony Awards during 2007, including Best Musical.  I wish I could go but I work the one day the captions are offered.  According to the Wash-CAP website they have successfully persuaded the Fifth Avenue theater in Seattle to caption some of their musicals for the 2009-2010 season.  I’ll be watching and waiting. 

 

If you wish to attend ‘Spring Awakening’ in Seattle, here’s the order form, or you can buy tickets at the window the day of the performance. 

 

IFHOH Day Three, Part II

Day three– part II

The first workshop we attended Friday was called Accessibility Awareness Collaboration and Hard-of-Hearing People given by Sami Virtanen from the Finnish Federation of Hard-of-Hearing People. Like the the real-time text workshop, I found it exceedingly difficult to pay attention. Tired of reading CART, and feeling full from the large lunch I nearly fell asleep. The late night, early morning routine was catching up with me. Virtanen spoke mainly about Finnish policies, especially with regard to required captioned television programming. The US has had that since 1990. I think the information presented was probably more useful to those in the political arena of policy change, because several representatives from HLAA, CHHA and various other HH/deaf organizations around the world stood up to comment.

I wanted to leave then, but Creating Consumer Awareness through Policy Change turned out to be a surprise. Sherri Collins was a firecracker from Arizona. After waking us all up by handing out prizes she detailed her personal hearing history, and drew a thought-provoking analogy between independence and accessibility. It was US Independence Day. I had forgotten.

Next, Sherri expanded on events leading up to a policy change requiring Arizona audiologists and hearing aid dispensers to provide information about the benefits of telecoils to consumers. Telecoils seemed to be a recurring theme at IFHOH.

Following her presentation, a few people commented they felt a law seemed unreasonably harsh. A man from Michigan spoke about how pressure had been placed on an airport to loop it without resorting to policy change. A woman from New Zealand detailed a sad story about an HH/deaf American tourist who was hit by a passenger train when he got off at the wrong stop after failing to hear an announcement. All NZ trains were looped for telecoil after that. Sadly, she said, it took a death to change policy.

One man remarked that telecoils should be called “accessibility coils” or a-coils since they were used for much, much more than the telephone. Discussion ensued about telecoil vs infrared and privacy concerns in courtrooms, federal buildings and other sensitive areas, since people with telecoils can sometimes hear outside looped rooms with the doors closed. Others protested that hearing aid manufacturers were making smaller, more attractive aids for the Baby-boom generation, dropping t-coil in the process. Two more concerns were voiced:

1) Policy to require telecoil induction loops in public buildings could become obsolete within a few years if hearing aid manufacturers stopped making hearing aids with telecoil capability.

2) Hearing aid manufacturers should be encouraged to include telecoil capability in their newer models because of the many, many benefits.

The final workshop of the day was Experience Working for and With Those With Meniere: A Non-Medical Perspective I attended this one mainly for my husband who was diagnosed with Menieres about six years ago. Dr. Henk de Graaf from the Netherlands reported on the results of a twenty-five year study of Menieres patients in his country. Then he led a discussion of alternative treatments for Meneires. One woman had some success with a chiropractic procedure where the feet were adjusted. Several people mentioned using vitamins, exercise, acupuncture, eating certain foods, not eating certain foods, reducing stress, yoga, marijuana– you name it. Someone else mentioned the Meniett device. Hoping to discover something new I could share with my husband, I came away feeling deflated. No one knows of a cure.

That night Lorne went to a football game. In the mood for something ethnic, Kate, Ann and I sniffed our way up Davie Street, and found a little Mongolian Grill.

IFHOH Day Three, Part I
IFHOH Day Two
International Federation of Hard of Hearing Congress — Part 1

 

Learning the Deaf Way of Life

Not long ago in a recent post (The Blame Game) I mentioned the need for Deaf support to help the late-deafened transition into deafness. My article focused mainly on the difficulties of learning ASL in a hearing environment, but there are a number of ways a Deaf person could support late-deafened people through the transition of learning to live with deafness.

Wendy beautifully described some new situations she’s dealing with now that she can no longer hear at all. How do you use a TTY? Where is the best place to put a flashing fire alarm? How can it be hooked up to notify you all over the house?

It might sound odd to some of you, but growing up hearing I was never exposed to any of this Deaf stuff. I didn’t know phones with text and blinking lamps, and shaking bed alarms existed. My entire family is hearing and all my friends used to be hearing. I was the first hard-of-hearing-going-deaf person I ever knew. When my hearing loss first began there was no internet, and there was no SHHH or ALDA in my area. My audiologist didn’t think to tell me how to negotiate every day living, such as what to do if you can’t hear your own fire alarm.

You would think an audiologist would offer some daily living support to a newly late-deafened person besides just hearing aids and/or cochlear implants, but in this regard audiologists are clueless. For example, at my last audiology appointment my audie pointed to my Sidekick and asked, “What’s that?” She had never seen one before. When I explained what I could do with it, she was amazed. I too was amazed– at her ignorance in this matter. Surely I wasn’t the only patient she’s ever had who couldn’t use a cell phone? Audiology clinics focus on helping people hear, NOT on all the accommodations deaf people can use when they CAN’T hear. It’s a void that needs to be filled, for sure, but who should fill it?

Everyone– both hearing and deaf– seem to think it’s the OTHER group’s responsibility to help us adjust. So by and large there’s no support for the late-deafened, except other late-deafened people, who are mostly learning as they go.

Gosh– it would be so great if a Deaf veteran took my hand and said– “This is how to do it!” I’m still trying to figure out the Video Phone I got from Sprint months ago. The problem is it was linked to a computer that died and everything’s been wonky since. I’m not sure what to do, so I haven’t used it in months. I’d love to use it to practice ASL with a few people I know. To be perfectly honest I’m still totally confused about all the different phone options for deaf people and how they work. It’s mind-boggling.

It wasn’t until I found SHHH (now HLAA) I learned a few things– about Harris Catalog, FM systems, my deaf rights and pocket talkers. I found them on my own twenty years after I started losing my hearing. Turned out there’s a wonderful support center for the Deaf/deaf/Hard-of-hearing in Seattle, but I hadn’t heard about them either. Through HLAA I found another group, the SWC, which is on-line. I can’t tell you how important their support has been to me. But my point is, I merely stumbled onto both these organizations twenty years AFTER losing my hearing. No one was there to help me cope for twenty years.

Whose responsibility is it to support deaf/Deaf/HH people?? Other deaf/Deaf/HH people. We would be much more powerful and effective as a community working together. Maybe it’s time to recognize none of us has the right answer for everyone. Maybe it would be better if we just reached out to those confused hearing parents of Deaf children and newly late-deafened people and said, “This is what works for ME, but there are other ways too.”

We’re all in this together.