The Cochlear Implant Spectrum: Two Experiences-Dennis and Kelly

This was originally posted on my blog and thought I would share it here also.

**Beware:  This is a long post.  I have had questions about how people benefit from Cochlear Implants (henceforth abbreviated as CIs) in different ways and decided to type up a post using examples.**

Everyone is unique.

CI users benefit from their CIs in different ways.  I have yet to observe two CI users who utilize their CIs in the exact same way.  It is fascinating to see how so many people use the same technology but in different ways.

Then again, maybe it makes perfect sense.

Think about it, children who are in the same classroom with the same teacher will perform very differently on exams.  A 5-year-old child in a class that is learning to read can read at a 4th grade level whereas another 5-year-old child in the same class is learning to read his/her own name.  We all are unique with our own strengths and weaknesses.  We all have different backgrounds.

There is a cochlear implant spectrum (for lack of a better word).

General Background:

Dennis is my boyfriend.  We both are profoundly deaf, we both sign, and we both have CIs.

Sometimes I use Dennis and myself as examples of what CIs have to offer.  We both are figuratively on the opposite ends of the CI spectrum.

Hearing Loss Background:

Dennis became deaf at the age of 3 from spinal meningitis.  His speech and spoken language were already developed.  He had heard for the first 3 years of his life even though he was so young that he does not remember being able to hear.

Ages 0-3 is the most critical period in a child’s life when it comes to language.

It wasn’t confirmed until I was 20 months that I had a profound hearing loss (even though I was born deaf).  I went almost the first 2 years of my life without access to a language.  I actually found some test results a while back that stated that I had the language skill of a 7 month old baby at the age of 2.  It was clear after being aided that hearing aids didn’t provide enough amplification to gain any speech discrimination (remember this was 20+ years ago).  Thankfully my parents worked hard at giving me access to a language.  I was given a language test again at age 3 which showed that I was no longer delayed (thanks mom and dad for helping me catch up).

Dennis and I both were mainstreamed.

Dennis attended school without sign language interpreters until college.  Growing up, Dennis was exposed to a little bit of sign language here and there.  He wasn’t really fully exposed to it until college, he then became fluent in sign language (more CASE/PSE than ASL).

I attended school with sign language interpreters and attended speech therapy.

Dennis and I both went through periods of wanting to wear hearing aids and refusing to wear our hearing aids as we went through school.

Dennis’ hearing loss was somewhat progressive over the years whereas mine was very stable.

Cochlear Implant Candidacy:

Dennis was told that he was the perfect CI candidate because of his hearing loss background.

If only my hearing loss background had been taken into consideration during my CI evaluation, I would have been the worst CI candidate.  I have read that some CI centers will not implant people who have similar hearing loss history as mine.

Cochlear Implant Timeline:

Dennis was somewhat resistant to the idea of getting a CI at first but was encouraged by his family to explore a CI.  He then decided he wanted to get a CI and was implanted about 9 years ago at the age of 22.

I was implanted about 20 months ago at the age of 25.

Cochlear Implant Activation Day:

Dennis could somewhat describe what sounds sounded like and could recognize sounds.  He was able to have a telephone conversation a few days after he was activated.

It took me a while before I could actually hear something.  Sometimes people don’t even hear anything because their brain just does not recognize what sound is.  I was just so glad I could actually tell that I was hearing something.  Everything sounded the same for the longest time and I had no clue what I was hearing.  I couldn’t even tell a train from a person’s voice.

Cochlear Implant Journey:

The journey is not easy but it is rewarding.  It took some time for Dennis to adjust to his CI.  For the first few days, his programming made people’s voices sound like Muppets – high pitched, twangy, and hollow.  After trying some different programs on his Advanced Bionics Clarion C2, he found one that made the voices sound “right.”  He decided to no longer use the other programs and stick with that one.  He made a commitment to work on listening and tolerating sounds – it took a lot of willpower to not just slip back into silence.

It took me a long time to adjust to mine.

It took practice and commitment for Dennis to hear well enough with his CI to make phone calls to unfamiliar people.  It tested my patience level with having a constant unfamiliar high pitch noise going on all the time.

Dennis can occasionally hear sounds out of his unimplanted ear.  It is rare for me to hear something without my CI or aid.

Cochlear Implant Benefits:

Dennis can pick out the next street over neighbor’s dog barking even if he’s listening to music.  He can have telephone conversations.  Oftentimes, he can identify which music instruments are played in a familiar song.  He can usually figure out which direction sirens are coming from and can oftentimes identify if it is a fire truck, ambulance, or a police car.  He can sometimes overhear information.  His speech is very intelligible.

I can pick out if there’s static when listening to music. I may hear the phone ringing if I’m lucky.  I can pick out that there are voices and music instruments in a song.  I rarely hear sirens.  I can pick up on environmental sounds that alert me to seek out more information (e.g. announcements).  If I’m lucky, people who are very used to my speech can understand a sentence I’m saying.

Cochlear Implant Limitations:

While Dennis does benefit greatly from his CI, there are times when he has to rely on visual clues to make sense of what he is hearing (e.g. lipreading).  People sometimes forget that there are times where he has to work hard to understand what he is hearing.  The hearing world would define him as a CI success story.

I benefit greatly from my CI but not in a way that the hearing world would consider me to be a CI success story. To me, my CI is successful even if it is limited.

We both struggle with background noises but in different ways.  Dennis can overhear conversations at times.  I can only separate 2 sounds at once and other sounds will get lost.  Sometimes I have to get Dennis’ attention that someone next to him is calling his name (e.g. background causing him not to hear his name and me lipreading).  Sometimes Dennis has to get my attention to let me know to focus on a sound I should be paying attention to.

Middle Ground:

We have the same technology but are complete opposites in what we gain from our CIs.  I get the general picture whereas he can get the details.  For example, I can tell when someone is talking by identifying the sound of a person talking.  He can hear that same person and can tell if they’re male or female and can describe that person’s voice.

No Can’ts:

We don’t focus on what the other person can’t do with our CIs.  Instead, we focus on what we CAN do.  We both enjoy sounds even if we hear them differently.  We can share our appreciation for sounds with each other.  I like knowing what Dennis can hear and he seems to enjoy knowing what I can hear.

We both are satisfied with what we gain from our CIs and our CI experiences.

Common Ground:

We both love listening to music together, we enjoy going to concerts.  We also enjoy being able to understand each other without depending on our CIs.  We enjoy both sound and silence


Dennis sporting his CI. (Doesn’t he look like a Secret Service guy in this picture?)

A side view of my CI.

Thanks to Dennis for his input!  Check out his blog at Positive Terminal.


Happy Thanksgiving!

‘Tis the season to be thankful. I’ll post about one thing I’m thankful for this year – the U.S. 21st Century Communications & Video Accessibility Act of 2010. I’ll write up more in an additional blog post, but basically the internet has become ubiquitous in my life and yet, I’m not able to fully access things like news or TV shows that are captioned on TV but not on the internet. Stuff like that will become handy as people continue to get older and are used to accessing the internet and getting the same experience they already do on TV.

HLAA’s press release on this item:

Have a wonderful holiday and if you’re out and about, safe travels!

Deaf Cultural Center of Kansas

Picture of inside the Deaf Cultural Center of Kansas - a girl is typing on an old green monster TTY in the foreground, in the background are exhibits in the museum talking about deaf culture.

I’m fascinated with the effect of hearing loss on people and communities in the world and in the United States. Hearing loss strikes people from all walks of life – poor, rich, smart, tall, short, strong, or weak. The commonality with hearing loss is that everyone struggles; life IS different when you have a hearing loss. Even a subtle hearing loss can affect, for example, social skills when cues and inflection are missed in speech and communication.

In Kansas, there’s a Deaf Cultural Center across the street from the Kansas School for the Deaf in Olathe that strives to convey those challenges and steps taken to overcome them. The perspective that “Hearing loss isn’t a disability, it’s a different ability” is a vital distinction to make to those who don’t have much exposure to the diverse group of hearing loss. Myths about hearing loss need to be dismantled and corrected; not all deaf people are mutes and only speak in sign language, in fact, they’re hardly representative of that population! Most people with hearing loss have a mild to moderate loss and are elderly or aging, and don’t identify with the rather small population of deaf signers. All this information is available in the museum housed within the Deaf Cultural Center.

A picture of an exhibit in the Deaf Cultural Center - talks about American Deaf History.

As a board member of the DCC, I highly encourage everyone to take a free tour of the exhibits and experience some of the hands on things that people with hearing loss go through daily, and even try out some of the assistive devices that make living with hearing loss and integrating with the world that can hear that much easier. Since the museum is also a non-profit and depends on donations to keep operating, consider becoming a member to support this center.

The Deaf Cultural Center is located at 455 E. Park Street in Olathe, KS 66061. Their website is at

Walking and Advocating with Kids

By Shanna Groves, KC HLAA Board Member

Originally posted at

Advocacy is always a work in progress… for everyone. That’s why I decided to include my 9-year-old son and 6-year-old daughter in a Deaf and hearing loss awareness 5K walk/run this past weekend.

We walked with leaders from our local Hearing Loss Association of America (HLAA) Chapter. I use the work “walk” loosely. My son decided to speed walk the entire time while my daughter followed several steps behind her Lipreading Mom. While walking and signing with fellow walkers, many of whom are Deaf and use American Sign Language (ASL), I used my “third eye” to keep track of my precious children.

After the walk, a Deaf and hearing loss resource fair was set up on the park grounds. I was supposed to assist with the HLAA table, but spent most of the time chasing after my curious kids. I first chased them into a tent set up with an ASL storyteller, who signed the words to popular children’s books. My daughter has always been fascinated with sign language, since she was a baby. At age 8 months, she and I attended a baby-mommy sign language class, and since then she’s taken to the language like a kid in a candy store. So the ASL storytelling held her attention. As for my son … Let’s just say I had to keep chasing after him.

Our next stop was an ASL arts and crafts booth, put on by the local school for the Deaf. My kids transformed two foam handprints into clever magnets depicting the sign for “I love you.” I’ll add these magnets to our eclectic collection of refrigerator magnets holding all their artwork at home.

At the next booth, we learned about  a local church starting a ministry program for Deaf and hard of hearing people. Beginning next month, the church’s Sunday night services will be CART captioned (Computer Assisted Realtime Translation) and sign language interpreted. What a Godsend. This would allow Lipreading Mom to attend church with the family and finally understand every word spoken, sung and preached. Hallelujah!

Our favorite stop was the food booth, where we gulped down Sunny D and munched on fruit, donuts and crackers. Entertainment was provided by a very loud guitarist and drummer with a local Christian band. Thank goodness for the ear plugs given away by an audiologist at another booth. Lipreading Mom does everything she can not to expose her little ones to noise that could harm their hearing and turn them into Lipreading Kids.

After 20 minutes of songs and snacks, we ventured to another booth giving away free books and stuffed animals to promote hearing aids. The book “Oliver Gets Hearing Aids” tells about a little hard of hearing elephant getting his first set of behind-the-ear listening devices. Lets just say that Oliver’s hearing aids were bigger than Lipreading Mom’s head. The animated book came with an Oliver the Elephant puppet that storytellers can wear and wiggle their fingers in. Guess who got to wear the puppet and read the book in a silly Oliver voice at storytime that night?

I’m thankful for opportunities, like this walkathon, to share in hearing loss advocacy with my children. Although they always see me wearing hearing aids and sometimes signing to friends, it’s eye-opening for them to see lots of other people in the same boat as Lipreading Mom.

What else can I do to teach them about advocacy?

5K Deaf/Hearing Loss Awareness Walk Photos

On November 20th, the Kansas City HLAA Chapter was represented at the 1st Annual 5K Deaf and Hearing Loss Awareness Walk/Run at Blackbob Park in Olathe. Among those attending from HLAA were Chapter Chairperson Dennis Selznick, Minda Nelson, Kelly Rogel, Alex Vetor, Lisa Ledo and Shanna Groves. The group participated in a walk/run around the park, followed by a hearing loss/deaf awareness resource fair on the park grounds. Other groups participating included the Kansas School for the Deaf, Deaf Cultural Center/Marra Museum, Olathe East High School, Nexus Church-Overland Park, Midwest Ear Institute, Associated Audiologists, and the Kansas/Olathe Clubs for the Deaf. Funds raised from the walk will go toward creating Kansas School for the Deaf’s outdoor athletic area.

HLAA-Kansas City Chapter officers set up a booth to tell more about the chapter (from left): Alex Vetor, Dennis Selznick, Minda Nelson, Kelly Rogel and Shanna Groves.

Minda Nelson (left), Alex Vetor and Morgan Brooks enjoyed snacks after completing the November 20th 5K  Walk/Run.

Fox 4 News provided media coverage of the 5K Walk/Run.

After the Walk/Run, attendees gathered to look at Deaf and hearing loss awareness booths on the Blackbob Park grounds.

Leslie Caldwell with the Kansas School for the Deaf welcomed everyone at the Walk/Run.

5K Walk/Run T-shirts were available for purchase, with proceeds going to the Kansas School for the Deaf.

AMC Corporate’s Response about Theater Captions

As mentioned before on this blog, Terri Shirley with the KC HLAA Chapter has been in regular communication with AMC Studio 30 Management about the lack of captioned movies at its Kansas City Olathe theater. Below is an update from Melissa Johnson, Director of Guest Services for AMC Entertainment Corporate Offices in downtown Kansas City. Also included are previous e-mails from Terri and Dan Glennon, Olathe’s AMC Studio 30 General Manager.

November 22, 2010

Hi Ms. Shirley,

Dan forwarded me your contact information along with some communication and questions that you have recently asked.  I understand your frustrations with the lack of CC/RWC (closed captions/rear-window captions) at Studio and am trying my best to gather as much information as I can to keep you up to date with the new installation.

 I’m not sure how much information Dan has been able to give to you, but I can offer some history to the mix.  Our theatres are progressively transitioning to all digital presentations (Studio went all digital 4/29)  When theatres are converted, the current technology does not allow for CC/DV films due to the complications in the CC/DV code.  There is a new product on the market that AMC is currently testing that will enable digital projectors to read CC/DV code.

 I have spoken with the Project Manager for Studio and he has expedited the work order for Studio and moved the theatre to the top of the list for installation.  Unfortunately the timeline for installation is a two-part phase that may take several weeks (after the parts arrive.)  This week he provided this insight:

 “We are very close – we’ve resolved the configuration problem that was the last major pre-rollout hurdle of the new digital captioning equipment, but still have a couple of approvals to get before we can begin scheduling installations.  Once those are made, the theatre will be receiving a few more minor pieces of equipment that will be necessary for installation.  Unfortunately, until then, I won’t be able to narrow down a date or time that it will happen.  We hope to test Mainstreet’s system next week.  As soon as everything checks out and is approved by our Technical groups and the Digital Team, installations will be scheduled.  Studio is high on the project list.  I understand the urgency, and I apologize for being unable to give you a definite date.  At this point, I do anticipate that it will be sooner than later.”

I know the team at Studio appreciates the business your group brings for the CC/RWC movies and values your loyalty.  Please bear with us as we continue to work towards bringing these features back to Studio.  Hopefully this information is insightful and valuable.  I will be your contact going forward and will continue to press for additional information on this project and keep you updated.  Our project manager has provided some answers to your questions below.

Thank you for reaching out to us!




Melissa J. Johnson | AMC Entertainment, Inc. | Director, Guest Services

920 Main Street | Kansas City, MO 64105 |( Office 816.480.4741 Mobile 816.695.2991 | Fax: 816.480.4618 *

From: Terri Sent: Monday, November 15, 2010 9:28 AM
To: Dan Glennon
Subject: Fwd: Fork and Screen experience

Hello Dan,

This is Monday and the start of a new week.   I thought perhaps trying to contact you with emails at end of week may not carry over to your next week’s agenda of things to do.

It has been six months since AMC Studio 30 has stopped CC/RWC.   I am looking forward to hearing back from you this week on a detailed update of the questions I mailed last week. I added a few below:

 1.      Did they order equipment?  DAN’S ANSWER: Yes. Additional minor components needed to complete installation will be ordered after test bed sign-off.

 2.      What date did they order the equipment? DAN: 7/13.

 3.      What is expected shipment date? DAN: Delivered 8/13, 1Z1848XW0359656536

 4.      How long does it take to ship from manufacturer? DAN: NO ANSWER

 5.       Where is the equipment being shipped from? DAN: Various; TX, CA, IL.

 6.       Do our AMC 30 employees need additional training to install new equipment?  DAN: No; theatre staff will not be participating in installation procedures.  TSE, QA, and a 3rd party contractor will be handling the installs.

 7.      What is the expected date of captioned movies for the hearing impaired community? DAN: Unknown; awaiting test system approval by S&S and Digital Team.

 DAN: Follow up that some type of captioning, such as RWC, will defiantly be available for every movie all week long.   Studio’s upgraded digital CC/DV system will be installed in-house #19, the same auditorium that their previous assisted moviegoing system inhabited.  Also, as it was with the 35mm system, not every feature includes closed captioning or descriptive narration content.  As with all theatres, Management will be scheduling titles that are CC/DV-compatible in their equipped house.   

 TERRI: As you know, many hearing impaired are boycotting movie theater shows that are not captioned.   I realize we are not AMC’s majority of a selling crowd.   However, it is still important as hearing impaired/deaf individuals that do pay for an un-captioned movie feel we do not get what we pay for.   Since we cannot hear all the words,  we can’t fully understand the entire plot of the movie.   For example, the Social Network, is spoken fast, main actor’s upper lip never moves and scenes switch back and forth in time, makes it difficult to piece enough of the things we can hear together for understanding full plot.  A hearing person understands the entire plot much better than we do.   After viewing such a movie, hearing impaired/deaf individuals wait months for the movie to come out to purchase or rent to see it captioned.   Most movies on iTunes are not even captioned to rent and some movies, sometimes do not come out captioned to purchase on the market.  Then I read Kansas City Star’s Fri, Nov. 12, 2010 article titled  Kansas luring AMC Entertainment from downtown KC I realized AMC probably has much bigger issues to focus on than captioning movies at AMC 30. Shanna (Groves) and I are speaking for the hearing impaired/deaf community.  We have contacted you with our needs and strong desire for captioned movies.   You are our voice to AMC headquarters.   I urge you to get on the phone and get some answers to the questions and continue calling regularly until we have reached our goal and mission is accomplished.   

 Thank you,

Terri Shirley

5K Run/Walk is this Saturday!

Don’t forget! Instead of our regular chapter event this Saturday, November 20th, HLAA-KC will be supporting the 5K Run/Walk event for the Kansas School for the Deaf. The walk is FREE. Please join us! We will walk together on behalf of HLAA. After the walk, HLAA-KC will participate in a booth expo at Black Bob Park until 12:00pm noon. There will be other booths with information from businesses and organizations supporting persons with hearing loss and deafness. Invite your family and friends, dress warm, and come for a great morning of exercise, networking, and hearing loss awareness.

Location: Black Bob Park, 14570 W. 151st St., Olathe, KS 66062

Time: 9 AM – 12 PM

Donations accepted. $15 t-shirts available for purchase. Snack bar. Informational booths.


Black Sand at KSD

This Friday and Saturday, the Kansas School for the Deaf will show the movie Black Sand at the Murphy Auditorium.

Black Sand — an ASL film

Four students descend upon a tropical rain forest resort in Costa Rica with the purpose of having an adventure for a vacation at an aunt’s place. Beautiful waterfalls and lush green jungles are the first sign of heaven but there’s also a darker side to paradise. Whatever it is, is it protecting a secret or is it something so unspeakable?

More film info:

Rating: PG-13
Running Time: 90 min.

The Friday showing at 7p.m. is captioned, the Saturday showing at 2p.m. is not. Tickets are $11 and proceeds benefit the KSDAA’s 150th celebration. See flyer for more information.


My mom, my advocate

When I was two and a half years old, my mom took me to the hospital because I was running an extremely high fever. The following weeks were nothing but hell on her. I got worse, fell into a coma, and was not expected to live. I had spinal meningitis. The bad kind. The doctors told mom: “Don’t get hopeful. Don’t expect her to survive. And if she does, she’s going to be a brain-dead vegetable in a wheelchair for the rest of her life.”

After a week, I came out of the coma. Testing ensued, including three horrid spinal taps, but eventually these doctors deduced that: “nothing is wrong with her but her hearing.” The fever had burned so hot that it destroyed the nerves that send auditory signals to the brain. I could not hear in my left ear, and the right was a profound loss.

Mom took me home. The disease had also made me forget how to walk, so she began to teach me. She got a big orange yoga ball and taught me to walk again. “So much for that wheelchair you’re supposed to be living in,” she’d say. And that’s how she always was.

Mom was the one who got me hearing aids, who insisted I be in regular classrooms not special needs rooms, who made me see I was just like any other kid. She was the one who marched into Mrs. Bressflaur’s first grade classroom and demanded I be allowed to sit in the front, not mandated to the back of the room because I was “too deaf to learn.” Mom bailed me out of the “teacher is peeing with the microphone on so let’s all listen to him and laugh” fiasco in fourth. And every time my phonic ear “accidentally” broke, she’d be right in there to make sure I had a new one and my education went uninterrupted.

When I saw my first glimpse of sign-language, mom was the one who learned it and then taught me. And when I realized that the Kansas School for the Deaf existed, she was the one who talked dad into letting me attend. When I had to go back to Lawrence High School for my senior year, mom got the school district to hire the best interpreter we could find, and flew her in from Oregon.

These days, I’m pretty self-reliant. Everything I saw mom do for me when I was young, I do for myself now. I stand up for myself, I advocate for what I need, and I fight for the things I’m denied and shouldn’t have been. I’m a strong, independent personality, because of mom. And these days, sometimes, she’ll start helping me out and I’ll remind her I’m not two anymore, and she’ll laugh and lets me do things my way. But I often wonder what kind of person I would be now, if I hadn’t had my mom.

Who influenced your life and your experiences with hearing loss?

AMC Movie Captioning Update

As of today, the captioning issues have not been resolved with AMC Theatres’ digital format films.

Terri Shirley with the Kansas City HLAA Chapter has been diligently communicating with AMC Theatre Management in Olathe about the need for captioned movies at the Studio 30 location. Below are Terri’s last two e-mail correspondences with Dan Glennon, AMC Studio 30 General Manager. We will post any updates we receive from AMC.

November 13, 2010

Hello Dan,

Glad we ran into each other a week ago.   HLAA members are currently going to Ameristar’s Regal 18 Cinema for captioned movies.   Due to not getting any real status of where AMC 30’s equipment is, I ask that you call again and get a real status.   Please ask as many questions as possible so they might actually wear out listening to you because I do not feel the message is getting across to them.    Sometimes a lot of attention to it helps.    So far there is no word of what the status is at all.  Did they order equipment?  What date did they order the equipment?   What is expected shipment date?  How long does it take to ship from manufacturer?    Do we need trained employee sent to site to install?  What is the expected date of captioned movies for the hearing impaired community?   Let the headquarters know the hearing community is driving clear to other side of city for captioned movies and that is how much they want it.   We do want to be taken serious about this.
Thank you,
Terri Shirley
On Nov 4, 2010, at 11:40 PM, Terri wrote:
Hi Dan,

What did they say last Friday when you called to get an update?    Please keep calling them.
Keep me informed and I will inform HLAA.
Thank you,
Terri Shirley

Date: October 30, 2010 9:13:56 AM CDT
To: Dan Glennon <>
Subject: Fork and Screen experience
Hi Dan,

The experience was overall great.     I am going to be glad when captions return.    Social Network characters talk very fast, the scenes flip back and forth.   I will rent it with captions when it comes out.

I wanted to tell you a snag so that you may be able to find a better communication method for your Guest Services employees.     I prepurchased tickets.    I had some people coming from Lawrence, my husband from his work and a daughter & boyfriend from another direction.  Guest Services had me write down their names on each ticket.    I was told to have them go to the Guest Services desk and ask for the tickets.     I texted everyone in my party to go through main doors and tell the ticket collector that their tickets were at the Guest Services desk.

The person behind the Guest Services counter is not the person I handed them to.     When everyone came, they went to the GS desk and were told they did not have them.   Then told they had to go to the ticket booth and ask for them.   Of course the tickets were not there.   Then they went back to the GS desk and this time the lady said she would not give the tickets to anyone unless she could see the credit card that purchased the tickets on.

I do not understand that because at “will call”  the tickets are paid for and they said they would let my daughter go look for me in the theater.  Well, I had to go out to the GS desk and talk to the counter person and showed her my credit card.  She said she could not find the tickets and sorry.

Just wanted to share with you.    Maybe you want to figure out how or if you will allow tickets to be left at will call in the future.

Did you get any new status yesterday after you called?

Terri New Blog from KC HLAA Leader

What happens when you have a hearing loss while raising a house full of young children? Well, that’s my life as a Lipreading Mom. Join me as I share about parenting with a hearing loss on my new blog Articles include Tips for Hard of Hearing Parents and Grandparents, Keeping the Faith, Surviving the Holidays, and more.
Subscribe to my new blog, and receive regular announcements about about everything related to living with hearing loss. Visit to subscribe.
Shanna Groves
Author and Speaker
LIP READER ~ Now available on and both of my blogs
New Blog!
Book Info!

What is it like to have a hearing loss?

Sometimes people ask me what it’s like to be deaf.  It’s a difficult question for me to answer since I don’t know what it’s like to be hearing.  I have to somehow understand what it’s like to be able to hear to fully answer this question.  I do ask people what it’s like to be hearing which oftentimes lead to fascinating discussions.

I have thought about this question many times over the year.  There are many different ways I can answer this question.  What is it like to be a deaf person in a hearing world?  How has being deaf shaped who I am?  How can I really understand what it’s like to be deaf if it’s the only thing I have ever known?

How can I truly explain what it’s like to be deaf in a hearing world without launching in a 5 hour-long discussion?  There are so many things to take into consideration.  I do think that being deaf has allowed me to notice the small pleasures that are sometimes overlooked by hearing people because the world is a loud place.  Colors are brighter.  Body language conveys so much more than spoken words can.

Oftentimes people just want to know what it’s like to live in a hearing world when I miss out on so much of what is being said around me.  That’s the main point of their question even though I have came to interpret their question in so many different ways.

One of the many answers that I try to offer when I am asked this question is for people to imagine what it would like to live in a foreign country if they didn’t know the local language.  You might be able to get the general concept based upon figuring out a few words here and there. I think it’s the closest way a hearing person can come to experiencing what it’s like to be left out of conversations and learning that you can’t count on others to tell you what’s going on. You will feel more self-conscious and not as confident when you’re not sure what’s going on. You will quickly learn that only you and you are responsible for yourself. You also learn how to use the smallest clues to figure out what’s going on. Sometimes, I feel like I’m always trying to put together a puzzle using clues that many people overlook. As a deaf person I have learned how to be independent, take care of myself, and that sometimes the only person I can trust is myself. I know I can’t rely on being able to communicate with people around me to figure out where to go, what to do, etc. I’m also used to having to go with the flow, not knowing what’s going on, and expecting the unexpected.

Being deaf in a hearing world can be very frustrating yet very rewarding.

How do you explain what it’s like to have a hearing loss to those who ask you?

KC HLAA to Attend Deaf Awareness Walk Nov. 20

We would like to announce a change of plans for the upcoming HLAA-KC Chapter November meeting. On November 20th, all of us have been invited by the Kansas School for the Deaf to participate in a *free* Deaf Awareness 5K Run/Walk in Olathe, KS. This was originally the day of our Chapter meeting at the KCMO-Plaza Library. To support hearing loss and Deaf awareness in Greater Kansas City, chapter leadership voted to participate in the 5K Run/Walk. Therefore, the Nov. 20th meeting at the library has been *cancelled.* The presentation orginally planned with Hamilton CapTel has been rescheduled for our March 2011 meeting.

With that said, please join us for the free Deaf Awareness 5K Run/Walk at 9:00am on November 20, Blackbob Park, 151st & Blackbob, Olathe. We will walk together on behalf of HLAA. After the walk, HLAA will participate in a booth expo at Blackbob Park until 12:00pm noon. There will be other booths with information from businesses and organizations supporting persons with hearing loss and deafness. Invite your family and friends, dress warm, and come for a great morning of exercise, networking, and hearing loss awareness.

To RSVP for the walk, e-mail so that we can look for you on the 20th.

Below is an official announcement from the Kansas School for the Deaf about the November 20th 5K Run/Walk. We hope to see you there!

Letter from Kansas School for the Deaf

Friends of KSD, Olathe East High School, and Community Members,

My name is Leslie Caldwell and I work at the Kansas State School for the Deaf (KSD) in Olathe, KS. I was contacted by an Olathe East High School Leadership Student team with the request of establishing a 5K walk to raise awareness in the community about Deafness and Hearing Loss. It is the vision of this student group to bring the Deaf, Hard of Hearing, and Hearing community together at one event to share information.

This 5K event will be held on November 20th, from 9:00am-12:00pm at Black Bob Park. Please refer to the attached flier. Participation in the 5K event is free. 5K t-shirts and food items will be available for purchase with all proceeds donated towards the building of an outdoor multi-purpose sport’s court on the KSD campus.

I am writing to you today to gather your support. I would like to formally invite you to host a free information table for this event. Our goal is to have tables available that not only showcase your business or organization, but more importantly to provide educational or interesting activities for our participants. We would like our participants to walk away from this event understanding more about hearing, hearing loss, and Deaf culture while having fun doing so. I have lots of ideas to help you develop your booth/ table. Some of these include but are not limited to:

Children’s Booth Ideas:
Coloring Page stations (audiological technology, Chuck Baird artwork/Deaf Artwork, Sign Language, etc)
ASL storytelling with voice support
ASL crafts
Face painting

Hearing Awareness & Deaf Culture Booth Ideas:
I-Pod Safety
Hearing Loss Simulations (spelling test at mild/moderate/and profound level)
Cochlear Implant Simulations
Hearing Conservation Issues (job noise-level exposure and protection)
Deaf Culture
History of ASL
Importance of Hearing Testing
Technology Demonstrations (consider potential power issues; since we are in a park)

Since there is no cost for vendors or exhibitors, we are asking that each table involved offer some type of drawing for a prize or gift certificate for those people attending the event. This may be something connected to your business or organization, or it could be a gift certificate to a local retailer or restaurant. Also, we are asking that each organization make a minimal donation of supplies to put towards the walk. Ideas for this may include but are not limited to donating cases of bottled water or soda pop, food donations, or cash donations to supplement printing costs for t-shirts and interpreting costs. We understand that the economy is tough for so many people right now and anything you can contribute big or small would assist in making this event a success.

If you are unable to attend this event, we ask you to consider sharing and posting the attached event flier with your friends, family, customers and clients. Getting the word out to the community through your store fronts, email lists, newsletters, websites, or Facebook would greatly improve the attendance and participation of this event. This is the first time we have attempted this type of event and appreciate any support that you can offer in sharing this opportunity with our greater Kansas City and Olathe communities.

To confirm your reservation for a table, email East Student, Madison Walsh at If you have any additional questions you may contact Madison Walsh via telephone at 913-981-3191 or Leslie Caldwell at 913-324-0600.

Thank you in advance for your support of this event. I am very excited about this opportunity to bring our community together.

Leslie Caldwell
Kansas School for the Deaf
Community Resource Facilitator