“Who’s Going to Tell Her to Turn the Music Down?”

Ran into a situation I never thought I would face in my lifetime – my co-workers told me to turn down the music!

I was sitting in my office with the door open, goofing around with a headset plugged into my computer.  I’ve been listening to music for a few days (for reasons explained below).  Today the sound quality was really poor, so I cranked up the sound as high as it could go and adjusted my implant, but even that didn’t really help.  Suddenly I looked up and realized several co-workers and students were standing in the hall giving me a “thumbs up” sign and grinning.  Then my co-worker, Dee Katovitch (who knows ASL), joined them and started signing the words to the song I was hearing ON MY HEADSET (????).  That’s when I realized my computer’s external speakers were plugged in but I couldn’t hear them.  Unfortunately, EVERYONE on the first floor of my office building could certainly hear them!  Dee graciously signed from the hallway to please turn down the music, while we all burst into laughter. There are so many funny things about this, I don’t know where to start.  Let this be a lesson for you folks who think disability politics can’t be humorous.  One student, Micah Fialka-Feldman, suggested I consider having a dance party.  A co-worker asked for the Deaf professor’s playlist.  I love it.  Weirdness abounds at good ol’ Syracuse University.

This whole thing started when my audiologist made a few final adjustments to my implant last week and then told me to practice listening to music.  Knowing I used to be a musician, he thinks I may be able to re-train my brain to pick up some music.  I’ve never really known anyone with a cochlear implant who can hear music well, but what the heck…let’s give it a try!

I recalled a colleague of mine who got a cochlear implant after becoming deaf in the 1970’s.  Her co-workers were appalled when she showed up with a gigantic nearly-big-as-her-desk 8-track cassette tape player right out “That 70’s Show” (for you young whippersnappers, 8-tracks preceded cassette tapes, which preceded those things you call CDs, which preceded digital music that magically floats through the air to your iPhone).

Picture of 8-track cassette player, with thick 8-track casette in it

8-Track Cassette Player. Image from http://phishcoventry.blogspot.com/2010/10/8tracks-mixtape-website.html

Anyway, my newly-implanted colleague of the ’90’s proceeded to listen to Bread and other greatest hits of the 1970’s in the office.  Her co-workers were happy for her, but wished her music was as cutting edge as her implant.

Bearing this in mind, I didn’t want to subject my co-workers to the greatest hits of the ’80’s, which I didn’t necessarily enjoy even while I was living in the ’80’s!  Air Supply pop or some big-haired mesh-vested ’80’s heavy metal artists, for example, wouldn’t necessarily endear me to my co-workers.  I also didn’t want to get music recommendations from my wife, Tracy.  I love many things about her, but even pre-implant I often looked at her collection of music and joked that my deafness might be one thing making our marriage work.

I considered asking Leroy Moore to send me some Krip Hop suggestions.  I  wondered if some of my more musically and hearing-inclined blind friends and colleagues (like Steve Kuusisto) might have some suggestions or if my question would go down the whole inappropriate blind-people-must-naturally-have-supersonic-hearing-and-excellent-music-skills-especially-if-they-are-Black road.  I tried to download some drum chants/songs used in Deaf culture (didn’t have any luck finding these online, though).  Mulled over Deaf musicians like “Beethovan’s Nightmare,” but wanted something more mainstream.  Then I read a Facebook post by young crip Cara Liebowitz at Kutztown University, who has a fantastic blog and is on the board of DREAM (a national group I advise for college students with disabilities, based at Syracuse University) .  She posted a list of kick-ass inspirational music for disability activists.  I thought, “YES! If I’m going to hear music again, let’s start with something that will be rabble-rousing!”  Because let’s face it…if I use the term “rabble-rousing,” I’m probably not cool enough to select my own music.

So I asked DREAM members to help me out, and several of them added to Cara’s list.  Over the weekend I used a few dusty iTunes gift cards and downloaded a whole bunch of music. (I kept expecting iTunes to flag my account for identity theft, since I’ve never downloaded music before.) Now I’m experimenting with listening to music, and here’s what I’ve found:

  • I need a headset – not speakers.  Unless I crank it up to the point where windows are rattling, the speaker on my computer and external speakers just don’t work well (see cautionary tale at the top of this blog post).  Lucky for me, Advanced Bionics designed my implant with a microphone hanging in the center of the ear right where hearing people typically hear everything (see photo of my implant here), so I can use a regular headset and it works pretty well.  My left ear picks up some really loud bass sounds that sound very “normal,” and that actually is complementing the implant sounds and making the robot/electronic sounds more intelligible.
  • Some songs are more implant friendly.  Male voices or low-range female voices are better, a strong booming bass is good, and a steady low beat is helpful. But that’s just because of my brain and my hearing loss (where the low pitches were last to go).  Other people with implants might prefer pre-adolescent females shattering glass with their high-pitched voices.
  • I need the words.  Thanks to the Internet, I’ve been able to find lyrics for every song.  So the first time I listen to a song, I have the words in front of me.  It helps my brain organize what I’m hearing.  Very interesting experience to not be able to really even hear the melody, and then to feel my brain shifting through the sound to find certain words, catching the melody and then holding on to it as I read the words.  Then after a few times through the song, I can usually find it without trying so hard.  After I find the melody and the bass, I can start to pay attention to the harmonies and instrumentals a bit, just to see if I can find them, catch them, and hold on to them in the same way I did with the words.  Then I have to think a bit to keep everything in my head at the same time, letting the melody float to the top above all the other sounds which are pretty much hitting me at the same volume.  Weird to have such an unconscious process become conscious, and I doubt I could do this without my musical training as a hearing person.
  • Ignore genre.  When I was younger, I would say I liked this type of music or that type of music, but my current playlist has country, alternative, rock, and rap.  I’m realizing that with the implant, the genre doesn’t really matter – the song matters.  That’s why songs by the Dixie Chicks, Eminem, and Michael Jackson didn’t make my final playlist for auditory training  . . . it had nothing to do with my preferences for style or artist, and everything to do with how my implant processes particular songs.  I kind of like this “problem,” though.  If I have to stretch my brain, it’s probably better to use different types of music, anyway.  The only exception might be instrumental or classical music, which hasn’t worked well.  Words seem to really help my brain focus, even when they aren’t especially intelligible.
  • It’s gotta be LOUD.  My implant has to be cranked up and the sound on my computer also has to be loud or it will be mush.  I’m thinking of asking Tracy if she wants to go hear some live music at a bar with me – what used to be intolerably loud might now be just right.  This may be another issue requiring advice from the undergrads – where do I go?  And then I suspect the next question for them will be – what do I wear?  I’m guessing my current wardrobe would leave me looking like Jimmy Fallon in drag doing Mom dancing.  See all the issues this implant is bringing up?

Some songs on my playlist that are working with my implant (in case you want to try them or follow the links to the words):

IMPORTANT TIP! Remember to turn off your speakers before you blast any of these at work! Disclaimer: The author of this blog, her co-workers, Cara Liebowitz, Facebook, my wife, local bars, Jimmy Fallon, and Syracuse University are not responsible for any injuries to hearing people’s ears if Deaf people start blasting these songs in workplaces.  As a public service, I will provide a link to a video for hearing people to learn how to sign “FINISH/ALL DONE” so you can tell the Deaf people to turn it off.  Of course, they may choose some universal sign to answer back in a way that is not as polite, but again…SO not my problem.


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My Interpreters Say I’m a “Success Story” – So Why Does That Bother Me?

So this week I had my last official appointment with my audiologist about my cochlear implant.  Now he is sending me on my merry way, with check-ins only if I have a problem.  Unlike many people with implants, I was already talking when I got mine, so I’ve avoided ongoing speech therapy (whew).

I thought you all might be interested in seeing my audiogram.  These are hard to read if you’re not in the medical field, but essentially they show low and high pitch, like the difference between one end of a piano keyboard and the other (running from left to right), and soft and loud sounds (running from top to bottom).  This audiogram has little captions to help people understand it.

Audiogram that is explained in the text

My audiogram, using image from http://www.terracehearing.com/index.php?p=1_19_Diagnosing-Hearing-loss

At the bottom of the audiogram, you see marks showing what I heard before the implant – the X marks are for my left ear, and the circles are for my right ear.  As you can see low pitches had to get REALLY loud for me to hear them at all, and as the pitch got higher, I could barely hear it unless it was booming.  After a certain pitch, it didn’t matter how loud things were – I couldn’t hear it at all (that’s why the marks only go halfway across the audiogram).

At the top of the audiogram, you see that my hearing in my right ear is now “normal” when tested by the audiologist while I’m wearing my implant.  If I take out the implant, I hear absolutely nothing in my right ear now (because they had to destroy my inner ear to put the cochlear implant electrodes in there).

Now gentle reader, I suspect your eyes are starting to glaze over, so here’s a different version of the audiogram, showing common speech sounds and other noises, so you can see how the boring audiogram matches up to sounds in the real world.  As you can see, with my current levels of hearing, I should supposedly be hearing pretty much every sound that hearing people can hear, from gentle “sh” sounds to lawnmowers.

Audiogram showing speech and sounds mapped onto different aspects of the audiogram (explained in the text).

Audiogram from http://hearingcareblog.com/2010/09/17/demystifying-audiograms/

There were a couple of interesting things that happened at this appointment, but one of them was that I had an interpreter and an interpreting intern (someone who hasn’t finished a degree program but is already starting to get experience working in the field).  The interpreter and intern were with me in the soundproof box during my hearing test.  Instead of being elated with the results and focused on the test of my hearing with an implant, I watched as the interpreter and intern tried to hide their shock at the results of my test.  I also had a speech discrimination score and got a 90% at recognizing speech.  I was surprised by the intensity of my anxiety and negative feelings at their response to my tests, given that I usually don’t really care what other people are thinking (and in fact like to mess around with people’s attitudes sometimes).

But I found myself explaining to the interpreter and intern that I wasn’t really hearing tones with my implant during the test – I was hearing them as static, tones, beeps, random noises…but not tones.  So a perfect audiogram didn’t mean I had perfect hearing.

They had seen me during the speech discrimination test, too, but I still felt weird about having them witness it without explanation and context.  I know they saw (and heard) the whole thing.  They heard the CD play a voice saying “The girl walked the dog outside.”  They saw me say, “Outside!  Something…oh wait…a dog!  Someone walked a dog…wait!  I think it was ‘The girl walked the dog outside.’ ”  In other words, they saw my brain scrambling to put together a coherent sentence from the bits I was hearing and what I already knew about the kinds of sentences audiologists would be likely to give me.  But I still started blathering something about, “You know, years of lip-reading and many years as a hearing and hard-of-hearing person who uses English as a first language gives me context for this, and that’s why I’m able to do it.  It’s not just the implant…” blah blah blah.

I was disgusted with myself.  Who the hell cares what they thought?  Why did I do that?  I tried to tell myself that the intern needed the context before she starts thinking a) “Why am I here for Wendy when she doesn’t need an interpreter?” and b) “Implants are better than I thought.”  But I have no idea what she was thinking. And she was there to facilitate communication, not to judge anything or get an education about implants from me.

Then to make matters “worse,” we realized that at my last appointment there was a mix-up with communication.  So at that appointment, my audiologist had tried to explain about the three channels on my implant, and I looked to the interpreter to give me accurate information because lip-reading the audiologist at that exact moment was causing confusion.  The problem is that I think the interpreter mixed up the channels too (I happen to know she had a learning disability of some kinds because she told me before the appointment so maybe that was part of it).  Anyway, it turns out I’ve been experimenting with the wrong channels.  So this week we cleared everything up, I turned on the channel I was SUPPOSED to be using for the last three months, and I said, “Wow! The sound quality is really good on that!”  And my first thought wasn’t “YAY!” My first thought was “Great – now the interpreter and intern will think my hearing is even better than what they saw in the booth” AND…drumroll…I was really upset about it.  The audiologist checked in on how the implant is working in various contexts and he was very pleased.  I keep downplaying the good things or trying to add caveats (“Yeah, but…”).  He said something about me being so negative, and I realized I was being negative because the interpreters were in the room.  If it had just been me and the audiologist, I would have been as pleased as he was.

When we left the appointment, the very first words out of the interpreter’s mouth (and signs on her hands) were “WOW!  You are such a success story!”  By now I was ticked off at her, the intern, and myself.  I gave my spiel again about how context is everything, how I really just need the implant to support my lip-reading, how it helps with communication with my sons’ friends, etc.  But I really just wanted to get in the car and get out of there.  I felt on the verge of tears, but also couldn’t understand why I was so upset.  It seemed completely out of proportion and not like me at all.

I got in the car and thought about what had happened and I realized I wasn’t really ready to cry or absolutely furious…I was afraid.

Then all the pieces came together and I understood what was going on.  I am a confident adult woman who is well educated.  I work in a disability-friendly university sometimes referred to as the Harvard of Disability.  I am totally comfortable with myself and actually enjoy the lovely mess of contradictions in my life.  But I have hearing people see me hear and I am afraid to the point where I can’t even immediately understand what I am feeling.

I hesitated to blog about it, but this is a teachable moment.  (“If it could happen to HER…”).  I have fought for 20 years to get interpreter services and convince people I am Deaf.  Even one of my best friends for many years in Minnesota suspected I was lying about how much I could actually hear.  Now I’m getting a perfect audiogram, and it seems a part of me is just terrified someone is going to take away my interpreters, or think I should be hearing everything like a hearing person, or get angry about why I’m still missing information in conversations or not believe me.  This is how ableism looks when it gets in our heads and hearts.  I’m on a campus where nobody is going to read this and take away my interpreters.  Nobody is going to accuse me of lying.  People here totally understand how the implant works and that I’m still Deaf culturally and very very hard-of-hearing in a functional, day-to-day way. They will still respect me.  They will understand.

But not everyone would.  I have had truly terrible experiences with universities trying to take away my services, refer me for therapy because “if you were just more confident you could lip-read better,” trick me into showing them I am really hard-of-hearing, or give me terrible interpreters because I obviously don’t need sign language and must use “sign supported speech.”  Gloria Steinem once said the worst part about oppression is that it’s like rain on a statue – the rock seems so firm and solid, but really it is slowly wearing away and losing its form.  So it doesn’t matter if I am a perfectly capable amazing person with wonderful co-workers I trust, because ableism and audism have still worn me down in ways I don’t even fully understand, only to rear their ugly heads at something like an audiology appointment where we should be celebrating that I took a risk and it paid off.

I see this with other people who have disabilities, too.  The person with mental illness who is doing particularly well, but minimizes it lest anyone now pile on unreasonable demands and stresses.  A woman whose epilepsy is cured but inexplicably doesn’t tell anyone for four months.  The student with dyslexia who is getting good grades but feels like a fake.  The man who gets a well-deserved promotion and wonders if he is now the token guy with a wheelchair in the department.  People with disabilities sometimes assume that when good things happen, it’s just a matter of time until that bites you or life sucks again.  We worry about the power professionals have over our lives and what will happen when they misunderstand, even if they are allies (as interpreters usually are).

The only cure for this internalized ableism is to face it head on.  It’s like ghosts on the many popular ghost-hunting TV shows.  You can run in with a tape recorder and camera, or scream and run for the hills.  I choose to write this blog and face it down.  My implant is a success.  I like it.  I find it useful.  I am impressed that my audiogram looks this good.  I am excited about messing around with the implant to see what it can do.  I am delighted I am getting enough to sometimes figure out speech without lip-reading.  I am also still Deaf.  I love ASL.  I need ASL.  Take away my interpreters and I will fight, because I will win.  Accuse me of lying about anything, and I will assume that says more about your ignorance than my level of hearing or deafness.  And FYI, I am not alone…there are co-workers, friends, a Deaf community, interpreters, family, and an audiologist in Rochester who are all on my side.  I am pretty tough, but with a community I can accomplish damn near anything I decide to do.   I will re-carve the statue ableism is trying to break down, and it may not look like the original, but it will be stronger and it will be beautiful.


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Language, Communication, and Children with Implants

Almost four million people have watched a YouTube video of a baby with a cochlear implant, smiling as he hears his mom’s voice for the first time.   What cold-hearted people wouldn’t be sniffling and reaching for Kleenex at the end of this?

Image of man crying with face scrunched up, Kleenex in hand

Weeping for the babies who can’t hear…
(Image from http://www.menshealth.co.uk/healthy/brain-training/12-things-to-which-you-should-never-admit)

Well, to be honest, many of us in disability studies were really irritated by this video.  If you watch, the Mom isn’t even looking at the baby at first (although now I know she was probably watching the audiologist), and she only smiles when the baby hears her.  Any first-year college student who has taken Psych 101 can tell you that “Mom Smiling + New Experience = New Experience Good.”  So many of us cynical (and cold-hearted?) disability studies scholars just saw this as one more video supporting the cultural idea that “Hearing + Speaking = Good” and “Deaf + Signing = Bad.”  At that time it first went viral, there was so much controversy about implants and babies that progressive thinkers who understood Deaf culture and American Sign Language (ASL) were as reactive as the Deaf community.

But now I saw a new article about that same baby, all of five years old now.  This is interesting for me because I’ve often wondered about what happened to that family after they realized they had years of speech therapy ahead of them, they still had a deaf kid, etc.  Turns out the kid is doing great.  But it’s not that simple!

Picture of Jonathan, wearing plaid shirt and glasses, smiling and using a yellow walker

Jonathan, age five (picture from the article URL above)

For those of you who bawled when you saw the video, you may want to note that Jonathan is still deaf.  He has had five years of speech therapy, and I’m sure this family will be sending the audiologist Christmas cards for years to come (they look Christian to me – why is that?).  He also needs to sign, which means his parents and siblings need to learn sign, too.

For you disability studies cynics out there, you’ll notice the implant is making a huge difference in his communication, and you’ll also see that we were a bit quick to judge without more context for the story.  This poor family had ONE WEEK to process what we’ve spent years studying and debating.  I may have made the same decision under these circumstances – it’s called hedging your bets.

People have been asking me to write about kids with implants in this blog, and I’ve been reluctant to do so (until now, obviously).  First of all, every person experiences implants differently, so there’s no way to say what’s right for any one kid or family.  Second of all, I just didn’t want to get myself enmeshed in a controversy that at one point likened cochlear implants to cultural genocide of Deaf people (here’s an introductory overview).  Third, I wasn’t sure what I wanted to say – my own experiences with my implant were too fresh to gain objectivity.

My views of implants in kids has evolved and may keep changing.  When I was a young college-aged student who had just learned ASL and became politicized, implants were evil.  I still remember telling a whole class of Deaf education students exactly what I thought of parents who would subject their children to such a thing – one guy started crying.  It turns out his infant daughter had just had an implant, and he was taking Deaf education to learn more about ASL and the Deaf community.  Even that didn’t take me down a notch or two.  Luckily I mellowed over the years as I saw many families struggling to make a decisions with everyone pulling them in one direction or the other.

When my own son was born (he happens to be the same age as the boy in the video), he and I went to the Deaf equivalent of “Mommy and Me” classes at the Beverly School for the Deaf.  I was the only Deaf mom (and the only mommy fluent in ASL).  Zack was the only hearing kid (and the only kid using ASL to communicate).  Other moms watched in amazement as Zack asked me for food or drinks, commented on other kids or toys, or expressed feelings of frustration (e.g., “All done! Let’s play now!”)  The other children had resorted to grunting, pointing, mime, stilted awkward speech, etc.  Not one of them could communicate well in English or ASL – they effectively had no language even though nearly all of them had implants.  The parents were at a loss about what to do, torn between wanting to hear a kid say the word “Mommy” but needing to also have an honest-to-god conversation of some kind.  And the clock was ticking…I knew that pretty soon these kids would NEVER have fluent language in English or ASL.  I was almost in tears just watching them, but the classes were great and the Deaf teachers were good for Zack, so we stayed in the class and I hoped other parents would see what ASL could offer.  One mom also told me that the Deaf teacher and I were the first Deaf adults she’d ever met.  So we kept going.

As I read about Jonathan and his family, what stands out to me is that his parents and I appear to share a similar parenting philosophy: a parent’s main job is to give kids as many opportunities as possible.  It’s not about what I need.  It’s not about what Zack wants.  It’s about Zack having lots of opportunities to be the best Zack he can be.  Likewise, Jonathan, who I once pitied for the oppressive implant he had to endure, is now thriving with opportunities to use his implant AND to use ASL.  His implant is like his walker – it’s just a tool.  We’re the ones putting meaning on that and deciding whether it’s right or wrong, good or bad, or Deaf or hearing.

But at the same time, I wonder whether his parents’ hours of ASL lessons have been anywhere near the number of hours Jonathan has spent in speech therapy.  I wonder whether his grandparents or any other relatives ever bothered to learn ASL (most never do).  I wonder whether his parents will ever decide Jonathan’s speech is “good enough” and let him do other things during the time he’s spending with speech therapists.   See, the problem with seeing an implant as a neutral tool like a walker is that it’s lovely in theory.  But 99 percent of all hearing people don’t see ASL as a useful neutral tool – it’s something you do as a last resort if everything else fails.  Until people start to think of ASL as an option that’s just as valid and wonderful as speech and an implant, it’s still entrenched in ableism (or audism, as Deaf people would say).  And society certainly doesn’t help, with insurance companies gleefully spending $75,000 on a surgery (yes, that’s how much mine cost), but balking at $5,000 on hearing aids.  They will (usually) cover speech therapy if the school district won’t pay, but good luck getting them to subsidize the cost of ASL lessons for the whole family.

If Zack was Deaf, I must confess that we would talk about getting an implant for him.  But whether or not we did, it would only be one tool in our toolbox, and we would follow Zack’s lead with how to use it. For example, I have a Deaf friend who adopted a Deaf boy who already had an implant pre-adoption.  He and his partner agreed to get to know the kid before figuring out whether to push speech, signing, both, or whatever.  Well this kid would go into speech therapy and every time the speech therapist said something, the kid would sign his response without even moving his lips (this story about a first-grade activist always cracks me up…).  He absolutely refused to speak in any context.  His dads thought, “Well, ok…he is using the implant to lip-read hearing people, but has no interest in speaking back to them, so that’s what he’ll do.”  When it came time to determine special education services, his dads agreed to the district insisting on speech therapy (which became lip-reading lessons) BUT the dads also requested “signing lessons” where the child worked with a fluent signer who basically gave him ASL linguistics lessons usually reserved for interpreters and grad students.  I love this example because it shows a more nuanced way of talking about children with implants, instead of coming down with either/or, right/wrong, good/bad arguments for or against.  I also know these dads will go with the flow if this kid suddenly decides to do something else as he gets older.  This is how it should be!

I wanted to end this post by showing all of you a video of a Mom signing to her baby, so you could get out the Kleenex again and see a different kind of Mom-baby-smiling-about-communication interaction.  Lo and behold, however, I couldn’t find ANY videos like this!

There were some videos on the Internet (or elsewhere) involving parents holding flash cards to teach signing (because that is SOOO effective with kids learning English from their parents?).  Other videos showed Mommy (never Daddy?) sitting on a couch with a book ala’ Ms. Teacher, signing the book while children sat on their knees on the floor.  This is so hearing!  I have never seen a Deaf parent do these things.  Ever.  Where were all the videos of Deaf parents (or fluent hearing parents) signing with baby on lap?  Or yelling in ASL at kids across the yard or a crowded room? (Yes, I do this all the time because it’s so darn convenient.)  Where were the videos of kids learning signs because the parents were signing?  For example, my son Zack’s first signs were “lights on” and “lights off” because that’s what he was interested in.  He didn’t sign “Mommy” for ages, because he could get my attention by waving or touching my arm or face.  I doubt there are flash cards with “lights on” and “lights off.”  He also learned the sign for “love” around the same time – because Tracy and I were goofing around with friends about how silly it looks to sign the Beatles’ song “All You Need is Love” (read the lyrics if you doubt me). He learned language in context.

So, thoroughly discouraged, I decided to instead show you a video of how we signed with Zack.  Now this isn’t a perfect example of signing with kids, because it’s my wife, who is hearing and doing a combination of ASL and spoken English.   But what you do see is the same thing the video of baby Jonathan had – a Mom showing how much she values communication with her child.  The difference is that Tracy is valuing all the ways Zack communicates: ASL, gestures, speech, and even nonverbal language like smiling or lunging back when he’s frustrated with her.  Plus, if you watch it, you will see that love has nothing to do with whether you’re speaking or signing.

P.S.  I know I am absolutely terrible for not captioning this video, but I think Deaf people can follow it.  I am trying to caption it, but having a terrible time with all the captioning software.  A student of mine has offered to help, so as soon as we get it captioned, I’ll upload a new version and post about it here.

Screen shot from video of Tracy and Zack

Screen Shot from Video of Tracy and Zack

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Guess Who Showed Up at the Dentist? Hint: He Likes Cookies

Just a quick post today…it’s the first week of classes so I’m swamped, but this latest experience was too good to resist posting.

Those of you who are following this blog know about my amusement with my cochlear implant’s interpretation of sound.  I blogged about how God seemed to speak through my church’s organ and I also posted my “Top 10″ list of best and worst sounds.  Well, now the latest installment relates to a visit to the dentist for a filling.

I used to live in Boston, and my dentist there would laugh because I was the first patient she had ever seen who could fall asleep while getting a filling.  While I now realize this may have been partially due to undiagnosed sleep apnea, my dentist and I agreed it was probably due to the fact that I couldn’t hear the drills in the dentist’s office.  She and I agreed that the worst part of fillings is the Novocaine shots, but after that there shouldn’t really be any pain if the dentist knows what she (or he) is doing.  As a child, I used to have off-the-chart anxiety before going to the dentist, but a series of talented dentists have eliminated (or at least greatly reduced) my fears of these nice people who just happen to love teeth.

Do you think of the dentist like this?

Image of smiling woman in dentist chair while kindly male grey-haired dentist looks at her, also smiling

Do you think of dentists with a smile on your face?
Image from http://www.whattoexpect.com/preconception/health-and-wellness/checklists-and-checkups/see-the-dentist.aspx#

Or do you shudder and picture the movie Marathon Man, with Nazi torture dentists?

Movie still from "Marathon Man" of Dustin Hoffman in dentist's chair and Nazi dentist in suit standing over him with tools in hand

Or do you think of this?
Image from http://cinematicthoughts.blogspot.com/2012/10/marathon-man-1976-is-it-safe-dustin.html

I went to the dentist on Friday and was a little nervous about the drill, knowing that actually HEARING a drill like a hearing person may be a truly horrifying, fear-inducing, ear-shattering experience.  So imagine my sweating palms when my dentist comes in.  She’s the sweetest, gentlest dentist I’ve ever been to, but the sight of her sent shivers down my spine.  I warned her that this was my first filling with the cochlear implant, and she assured me that if the sound was too awful, we could stop, and I could put the implant in my pocket.

I survived the Novocaine part without too much ado, but then she picked up the drill and my shoulders tensed.  Imagine my surprise when the dentist drill made me think not of smiling elderly dentists, not of Nazis, but of this:

Cookie Monster, dressed as doctor, with Ernie and an apple

Dr. Cookie Monster!
Image from http://hxhpodcast.wordpress.com/2012/04/30/episode-30-dr-cookie-monster/

That’s right!  Dr. Cookie Monster!  The drill sounded like cookie monster’s famous cookie-eating sounds of “NOM!  OM! OM! OM!” with the deep graveling voice of Cookie Monster, but just slower: “OMMMM!  OMMM! OMMM!”.  Then every once in a while there was a noise that I suppose was kind of an electronic whine, but my implant thought it sounded like “AHH!” like when Cookie finishes eating and sighs contentedly.  So the drilling became “OMMM!   OMMM!  OMMM!  AHHH!”

(For those of you adult hearing people who haven’t heard cookie monster in a while, there’s a YouTube video about his cookie eating at https://www.youtube.com/watch?v=Cqz9ZXUoUcE.  The video’s automatic captioning is as horrible as usual, if you’re deaf and hoping to watch it.  I couldn’t find a single captioned video of Cookie, unfortunately!)

Obviously I started laughing, which is difficult to do with numerous dental instruments in your mouth and two people working to fix a filling in a tricky spot.  We had to stop, and then when I imitated the sound and explained myself, the dentist and hygienist also started laughing.  I’m still wondering what people in the adjacent rooms thought was happening…

I am also amused by the thought of Cookie Monster showing up in the dentist’s office, given his fondness for sweets.  Maybe that makes sense somehow – karma is warning me to stop eating cookies?  I have started Weight Watchers, so maybe my unconscious is trying to tell me something?


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Merry Christmas and a Finger in Your Ear

It’s my first holiday with my cochlear implant.  I think I haven’t written for a while because I’m still trying to process (pun intended) everything that’ s been going on for the last month or so…

1950's black and white photo of people gathered around a piano singing, with Doris Day on piano bench next to man playing

Singing around the piano – a Christmas tradition for anyone whether or not you’re as perky as Doris Day (image from http://reggiedarling.blogspot.com/2011_01_01_archive.html)

After Thanksgiving, dear friends visiting from Boston helped us set up our Christmas tree while we drank egg nog.  I have an annual tradition of playing Christmas carols on the piano after the tree is up – it’s always the first time I break out the Christmas music.  Any pianist (or Christian pianist, anyway) can tell you that Christmas is when any piano player worth their salt can bang out some carols for sing-alongs.  Even kids in their first year of lessons can usually pull together a version of “Jingle Bells.”  I LOVE carols, and look forward to playing them every year – my fingers get itchy just thinking about “Sleigh Ride” or the cool chord combinations as I play “Chestnuts Roasting Over an Open Fire…”

This year was bittersweet because it didn’t go very well.  I knew it wouldn’t be the same with the implant, but it was bad.  The implant in my right ear gave me some tinny staticky noise, especially in the higher pitches, and I couldn’t pick out any melody. My residual hearing in my left ear gave me fairly normal noise, but only in the very low pitches.  Together it was awful – it sounded like the same song played on two instruments in two different keys at the same time.  Or if someone played two versions of the same song at the same time, as performed by two different artists.  Ugh.

Black and white image of blond woman scrunching up face while putting fingers in ears, as if listening to unpleasant sound

Carols with Implant – Ugh!
From http://dudepartyon.blogspot.com/2010_07_01_archive.html

I tried taking off the implant first as Plan A, but the implant surgery destroyed all my hearing in my right ear, and I have so little residual hearing in my left ear that the music just doesn’t work with it – it’s too quiet and I hear too little to appreciate anything.  My experience improved immensely with Plan B, when I had my five-year old come over and put his finger in my left ear.  Then I only got music through the implant and it was slightly more tolerable, even though it didn’t sound “normal” to me.  Of course, my son and I both burst into giggles after about one minute, but for that one minute I had some fun hearing music only through the implant.  Rest assured that my implant manufacturer does not recommend anyone putting a child’s fingers in their ears!

I also confess to occasionally cranking up Christmas music and singing along in the car during the holidays.  Yes – even as a Deaf non-implant person I did this!  Remember that listening to music is just like lip-reading, so give me a little context and my brain can figure out what I’m listening to.  Usually I could get enough from the bass line to not only figure out the song, but also to jump in and figure out the key so I could sing along.  I didn’t really care whether I was on pitch or not because I’d only try this when I was alone.  Now I can’t figure out the key with my implant, I can’t pick out a bass line or a melody, and if I sing,  my own voice drowns out anything I’m hearing from the car stereo.  So one more way I am NOT enjoying holiday music this year.

The whole key to this implant thing, though, is taking time to train your brain.  After a month or so of Christmas carols everywhere, I’m happy to report that I’m already noticing it’s a little better.  I can pick out a few songs – “Jingle Bells” is the easiest one because of the beat.  The worst ones are anything with orchestral music (can’t pick out any one instrument or melody) or any songs with notes that are held a long time – “O Holy Night” sounds like a scene from a horror movie just as the ghosts with chain saws jump out of a closet.  “Angels We Have Heard on High” sounds a bit like someone on a roller coaster: kids yelling OOOOHHHHHooooooooOOOOOOOOOHHHooooooOOOOOOOHHHHoooo” instead of “Glorias” gracefully trilling up and down.

Ever wondered what music sounds like through an implant?  I found some places online that can help (I think).  Good luck, because I have no idea if these are accurate!

YouTube video with speech and music:

An auditory neuroscience blog gives it a try, but with a complex piece of music:

One more: http://www.hei.org/research/shannon/simulations/

I admit to being blue about the holiday music thing – I know this music so well and have been enjoying it since my mother taped letters to the keyboard and I started banging out “Away in the Manger” at age four.  It’s hard to have that wrecked by the implant instead of improved.  My audiologist has said over and over that the first sounds you lose are the last sounds to come back.  So I’m sure the music will continue improving over time, but I miss it this year.

Despite my mixed feelings about Christmas music, I had a lovely holiday.  I’m sitting on the couch right now watching snow falling gently in Arkansas, where we’re spending Christmas with my wife’s family.  Kids are running around with new toys.  A tree is lit.  There’s egg nog in the fridge.  Despite many households this year facing poverty, grief and tragedy, or separation from loved ones, we’re very blessed.  The true spirit of Christmas has nothing to do with which music you can hear, and whether you need a kid’s finger in your ear to do it.

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Why I Could Go to College – A Thanks to Veterans on Veterans Day

Most college students know about the Americans with Disabilities Act (the ADA).  A few even know this was amended in 2008 as the ADA Amendments Act.  Another group might know about Ed Roberts, who integrated UC-Berkeley in the 1970s, or Section 504 of the Rehabilitation Act, which was the first federal law to prohibit discrimination against people with disabilities in higher education (especially at public colleges and universities).  But very few people know about the role that veterans played in opening up disability access at colleges and universities.

While getting my Master’s at the University of Minnesota, I wrote a paper about “The Rehabs” (as they were identified) – the WWII vets with disabilities who went to the U of MN on the G.I. Bill.  Campuses across the country were flooded with vets (see picture of crowded classroom below).

University Classroom Crowded with World War II Veterans

University Classroom Crowded with World War II Veterans – from http://www.madblog.org/2011/09/an-unexpected-catalyst-the-gi-bill/

Many colleges and universities were shocked to realize they were getting vets with disabilities, and they didn’t know how to deal with them!  As a result, they cobbled together professionals working with disabled children,  rehabilitation professionals, medical professionals, psychologists…pretty much anyone they could find.  They had these campus-based people work with the veteran’s bureaus to figure out what we would now call “disability accommodations.”  This was the first generation of disability services offices, which are now found on nearly every campus.

Some campuses were even ahead of their time, and started thinking about how to make the campus itself more accessible.  Laws like Section 504 and the ADA have made it commonplace to think about changing the environment, instead of assuming people with disabilities are just problematic people who should overcome whatever ails them.  So some campuses, most notably the University of Illinois at Urbana- Champaign, went out of their way to make wheelchair-accessible campuses, to have athletic groups for wheelchair users, or to have clubs for vets with disabilities.

Vets with Disabilities at U of IL - Urbana-Champaign, hanging out around a table with coffee cups, smiling.

Vets with Disabilities at U of IL – Urbana-Champaign.
From http://woundedvetcenter.ahs.illinois.edu/WhyIllinois.aspx

Now a new generation of vets is entering higher education.  These veterans from Iraq and Afghanistan are coming in on the second generation of the GI Bill, and are often called “Wounded Warriors.”  Many of these vets also have disabilities, including post-traumatic stress disorder (PTSD) from numerous tours of  duty, brain injuries from explosive devices, and physical injuries.  Disability services is having to adjust, once again needing to work with veterans’ bureaus (or Veteran’s Affairs) and VA Hospitals.  Professionals are re-evaluating whether current practices with brain injuries and mental illness are working, or if they need to evolve with the times.  (For more information about how disability services offices are adjusting, check out a special issue on veterans by the Journal of Postsecondary Education and Disability.)

Like many, I long for peace and am conflicted about the wars we choose to join and the international conflicts we choose to ignore.  But I am eternally grateful for what veterans do – and that they are willing to offer their life for my safety and security.  I am the friend, professor, aunt, niece, daughter, and sister of veterans, and know many who serve.  But today I honor vets with disabilities in particular, for opening up higher education so I could get a good education, and for pushing higher education even further so disabled students of tomorrow can benefit, as well.  They fought abroad and then they fought on our campuses at home, in ways that are seldom acknowledged.  I hope some people reading this will choose to stand with them and support greater inclusion and integration of people with disabilities on their campuses.  There is still much work to be done and many battles to be fought.  They don’t need to fight this battle alone.

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Thanks to the Implant, God is Speaking to Me in Church

This morning I had a profound religious experience that left Tracy and me having fits of giggles in the back pew of church.  Thank heavens (yes, pun intended) that our new pastor at Plymouth Congregational has a sense of humor, because he saw the whole thing, and wondered why classical organ music from 18th century France was so amusing.

Here’s what happened…

During the service today I was experimenting with all the settings on my cochlear implant, because Tracy reminded me that our church has a built-in loop system that works with the T-coil setting on my implant.  So sound goes from the microphones to the wires hidden around our church, and then the sounds are beamed out to anyone in the congregation with a T-switch in their hearing aid or cochlear implant.  Like a previous experience at the movies (see the next post on this blog about that), I thought the T-coil setting worked ok…but not great.  The sound was really quiet and still wasn’t very clear.  There’s no way I could go to church without interpreters.

But the REALLY funny part of church came at the very end when our church fired up a newly-renovated organ, making this the first time I’ve heard organ music with my implant.

Have you ever looked at an optical illusion?  If you relax your mind and your eyes, you see different things – like this famous one where you see two white faces in profile looking at each other, or you see a black vase/table thing in the center.

Optical illusion where there is a black vase, but the white space behind the vase forms the shape of two faces (in profile) looking at each other

Optical illusion from http://www.sapdesignguild.org/goodies/optical_illusions/foreground_background.html

So I was sitting in church goofing around with the three settings on my implant, and suddenly I just sort of relaxed my mind and had an “auditory illusion” instead of an optical illusion.  The sounds of the organ started sounding a bit like words.  I immediately started cracking up and interpreting for Tracy, who then also started laughing.

For example:

  • Organ plays low-pitched “BUUUUUUM” (I hear “MINNNNNNE!”)
  • High-pitched “do do dee-dum” (I hear “WE ARE KEEP-ING”)
  • Middle-toned “da da da” (I hear “SAN-TA-NA”)
  • Fast “beh beh beh bah boh bah” (I hear “WHY? WHY? WHY? DON’T KNOW DON’T”)

So, I don’t know about your opinions of this, gentle readers, but obviously God is speaking to me through the organ, courtesy of my implant.  Or maybe it’s angels.  I would suspect saints, but we are UCC (United Church of Christ), and saints don’t show up all that often for protestants.  And the UCC motto is “God is Still Speaking.”

Anyway, if you put it all together, the Holy Spirit was saying SANTANA MINE. WHY ARE WE KEEPING SANTANA?  DON’T KNOW.

Well, goodness.  I don’t know either.  But obviously I should try listening to some Santana soon.  Maybe Santana CDs are like old Beatles albums which, when played backwards, supposedly said “WE LOVE THE DEVIL” or “WORSHIP THE QUEEN OF ENGLAND” or whatever.  Maybe the Santana albums, played forward through an implant, will say “YES, I SPOKE TO YOU THROUGH YOUR IMPLANT AND THE CHURCH ORGAN AND ASKED YOU TO LISTEN TO THIS ALBUM BECAUSE IT’S ONE OF MY FAVES AND YOU ARE THREE DECADES BEHIND ON MUSIC AND ONLY REMEMBER THE OAKRIDGE BOYS, KAREN CARPENTER, AND AIR SUPPLY, WHICH IS NOT MY DIVINE WILL AND IS, LIKE, TOTALLY SAD.”

Of course, you’d think God would send me messages through print or interpreters, but we shall see…pray for me.


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Experiments with T-Coil and Captioning Glasses at the Movie Theater

As I’ve explained before, I get different channels on my implant.  No…not HBO vs. ESPN.  Instead it’s a choice of one microphone, two microphones, or the t-coil setting.  I hadn’t really had much of a chance to try out the t-coil.  It seems most phones aren’t really compatible (???!!!), so not many opportunities to use it.

Then last week, my wife Tracy and I went to the local mall after learning we can see ANY movie at ANY time.  Let me explain…

When I first became deaf, movies were out of the question.  Then they developed something called rear-view captioning, where words are projected on the back of the movie theater, and then you put a plastic reflective thing in your cup holder to catch the reflection of the words, hopefully being able to set up everything just right so you’re reading the words under the projection of the movie.  Here’s a graphic showing how it works:

A graphic of man sitting in seat reading captions on a screen while watching movie.

Image from http://ehotelier.com/hospitality-news/item.php?id=P20207

This was tricky because if the plastic thing was falling down (which it often did), the screen was scratched (which it usually was), or the rear projector stopped working (as it often did) then the whole experience fell apart.  At one time in Boston, I probably had half-dozen free movie tickets because the theaters had to keep giving me back money when their rear-view projectors stopped working.

Then the theaters came up with open captioning.  Just like on TV, but in a movie theater.  So locally in Syracuse, this meant that every week the theater would show an open-captioned movie at least a couple times each day.  The system is great.  The problem is that none of the hearing people wanted to go see the movie – every time I went there were usually fewer than five people in the theater.  So it was a good way for theaters to lose a lot of money.  And sometimes there were weeks in a row where all the open captioned movies were bad, or movies I didn’t want to see.

Here’s a strange example of open captioning (the only one I found online):

Movie screen showing captioned words on bottom in yellow.

From http://www.natoonline.org/infocus/03november/insight.htm

Well now the local movie theater has a new system where people wear weird futuristic glasses (they even fit over regular glasses).  You also wear a little black box – it’s attached to a string you wear around your neck like a necklace or ID/key lanyard.  So the theater broadcasts captions out, the little black box catches them and they’re relayed to the glasses.  So as I looked at the screen, I saw little green words with all the captions.  Sounds complicated, but it was great!  I can see any movie at any time, the theater was packed with “regular” movie-goers, and I could sit anywhere in the theater.  Tracy tried it out, too.  Here’s a picture of her wearing the device.

Picture of Tracy wearing glasses

Tracy and I have heard a few complaints.  Some people say they feel dizzy with trying to look at close-up words and far-away movie screens.  Others feel like the glasses draw attention to them being deaf.  I think the whole “oh gosh, people might know I’m deaf” thing is just ridiculous.   It’s not like there’s a lot of stigma attached to being deaf, and if people are ashamed to use accommodations and services, then we’re just putting ourselves “back in the closet” so to speak.  Not a good move…

Anyway…got into the theater and Tracy remembered the movie theaters all usually have a loop system, so people with t-coils in their hearing aids or implants can connect to the sound of the film.  So I turned it on.

I definitely picked up sounds from the movie, but it wasn’t intelligible and wasn’t nearly as interesting or cool as the captioning with the glasses.  I wasn’t terribly impressed.  The sound was also really quiet, so I have to ask my audiologist to crank up the volume a bit.

Tracy and I are already booking babysitters so we can go out and see some more movies.

I laughed at us staring at the movie listings in the ticket booth.  We looked so indecisive, trying to figure out what to see.  But in our 18 years together, we’ve never had to decide which one to see…the theater always chose our movies for us!

Hotel transylvania poster

“Hotel Transylvania” image from http://www.natoonline.org/infocus/03november/insight.htm

We ultimately decided to do a mindless fun movie and saw “Hotel Transylvania,” about Count Dracula, who invites every monster he knows to a 118th birthday party for his daughter, and then deals with a funny low-key surfer-dude human who accidentally stumbles into the party.  Probably wouldn’t have been quite as  entertaining without the glasses and our light-hearted mood, but it was a fun way to kick off our new adventures at the movies!

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More Information about People with Disabilities and Hurricane Sandy

Just got another link today about the hurricane – if you follow this, it will take to a transcript of  a National Public Radio show on how people with disabilities in New York City are doing in the aftermath of Sandy.


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Hurricane Sandy

I’m usually pretty light-hearted in my posts, but Syracuse was right in the path of Hurricane Sandy, which suddenly dodged west earlier than expected, leaving us with rain and winds, but no significant damage.

I am watching the images on television and in newspapers, and while my heart aches for everyone affected by Sandy, I can’t stop thinking about people with disabilities.  It is hard to get information when emergency broadcasts are not always captioned (although I was pleased to see interpreters by NYC mayor Bloomberg every time he made an announcement to the press, as shown in this amusin post about Bloomberg’s bilingual announcements).  Even now, CNN, MSNBC, FOX, and other online news services are not captioning videos.  When electricity goes out, assistive technology and medical equipment fail.  People with physical disabilities often have difficulty finding accessible shelters or getting out of buildings in emergencies.  Medications can’t be refilled.  Extreme changes in weather can also exacerbate disabilities (for example, my asthma flared as the weather worsened, leaving me back on steroids temporarily).   I am still haunted by images from Katrina of people who had died sitting in their wheelchairs in abandoned hospitals, stadiums, and neighborhood streets, covered by sheets and left for emergency workers to find.  The current director of FEMA wrote about this in 2010, in an article for CNN, where he says:

“The root of the problem lies here: Historically the U.S. emergency management field has treated people with disabilities as a separate population, rather than as part of the larger community. This limited approach not only directly violates the intent of the ADA, but ties up personnel and resources when a disaster strikes. It jeopardizes everyone’s safety.”

Image of broken wheelchair by broken mirror after Katrina


So as you keep everyone in Sandy’s path in your thoughts and prayers, take a moment to acknowledge adults and children with disabilities who are facing additional barriers to safety, shelter, services, information, health equipment, rescuers, or medical care right now.

And in case you want to do something, check out this link on CNN and then help in whatever ways you can.


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