Overkill?

At the beach in Ocean City with cochlear implant, hearing aid, and hearing assistance dog
At the beach in Ocean City with cochlear implant, hearing aid, and hearing assistance dog

1. I’ve had people with cochlear implants before ask me why I don’t just use a cochlear implant. One (or two) works for them after all!

2. I’ve had people with hearing aids ask me why I choose to get a cochlear implant in my “worse” ear.

3. I’ve had folks with CI’s and HA’s ask me why I use assistive devices in the classroom if I am “hearing again” so well.

4. I’ve had people with cochlear implants ask me why I need a hearing assistance dog if I’m hearing so well now.

5. I’ve had people who were culturally Deaf ask me why I don’t just use ASL since I am proficient in the language.

6. I’ve had people who were late-deafened ask me why I do not just continue to speech read. Why embrace technology?

Overkill?

These are all legitimate questions. I will do my best to answer them.

1. I’ve had people with cochlear implants before ask me why I don’t just use a cochlear implant. One (or two) works for them after all!  Not everyone who qualifies for a cochlear implant can go bilateral. I have Meniere’s disease and I barely squeaked by in pre-surgical balance testing to be a unilateral candidate. I use a hearing aid in the opposite ear because – well, because my audiologist told me too! My audiograms and testing each year astonish my audiologist at Johns Hopkins. Who would have thought I could hear this well? However, the proof is clear. I gain an extra 3-7% when I use a hearing aid in my unimplanted ear.

2. I’ve had people with hearing aids ask me why I choose to get a cochlear implant in my “worse” ear. I chose to get a cochlear implant because with the best BTE hearing aids available, I could no longer hear well enough to carry on a normal conversation. I learned all I could about cochlear implants and took the “plunge” in April of 2005. I’ve never regretted it. A comparison of my audiograms can be found at this post: CLICK HERE.

3. I’ve had folks with CI’s and HA’s ask me why I use assistive devices in the classroom if I am “hearing again” so well.  I hear great in “most” indoor environments. I even hear outside fairly well if there is not a lot of competing noise. But let’s face it. Listening environments are not the same. Some rooms are huge with cathedral ceilings. Some have all hard surfaces. I use assistive devices because it helps to eliminate one of my greatest enemies. NOISE. Isn’t it funny that as a “hearing again” person, noise interferes with my hearing well? My favorite device as a teacher is my clipboard. You can read about it at this post: CLICK HERE.

4. I’ve had people with cochlear implants ask me why I need a hearing assistance dog if I’m hearing so well now.  This is probably the number one question I receive in person, from readers on Hearing Elmo, through FaceBook, and through email. My hearing assistance dog from Fidos For Freedom gives me something that my cochlear implant and hearing aid do not. Independence. When I trained to be matched with a service dog, I was not only learning the commands, but also learning to watch my dog – and to trust my dog. I needed that training! I am confident in knowing that if I do not hear something, my hearing assistance dog will let me know. This may mean becoming aware that a car is coming up behind me in the parking lot. It may mean that I will know before rounding the end cap, that there is a noisy family on the next aisle. I know if I drop things. I know if intercoms are giving announcements. I know about alarms going off. I know when people are saying “excuse me” so that they can get past, and much, much more. I feel safe. I feel confident. I am independent. I didn’t feel those same things when only utilizing a CI and HA. (Besides with my balance issues, Chloe has become just as necessary to me because of her balance work).

5. I’ve had people who were culturally Deaf ask me why I don’t just use ASL since I am proficient in the language. Bottom line? I am not culturally Deaf. I was not born with hearing loss. Everyone close to me has normal hearing. Don’t misunderstand. I love ASL and have been teaching the language for over twelve years. I actually rely on sign at home if I’ve taken my ears out (as well as speech reading). However, I was born into this world with ears that hear. It made sense (to me) that when I began losing my hearing that I fight to regain as much of that as I was able to do. I do not criticize those who embrace their deafness. I love the culturally Deaf and have learned how to advocate in a positive way from Deaf friends. But… I’m not Deaf. I am a person with hearing loss who is “hearing again”.

6. I’ve had people who were late-deafened ask me why I do not just continue to speech read. Why embrace technology? Speech reading (or lip reading) is not an exact science. Don’t believe me? Try it sometime. Get a friend or family member to voice some simple sentences with their volume “OFF”. Can you accurately pick up what they are saying?

According to the CDC (2012), a good speech reader will be accurate 4 to 5 words in a sentence of 12 or more words. I have news for you. 33-50% by the BEST, means they are not communicating well. Even for those who are terrific at understanding “in context”, will still be asking for repeats or clarification (or sit there “lost”). I still speech read some. It is only an additional tool to help me communicate at my best, however.

Use It All!

So. Is the way I’ve chosen to stay connected, to communicate, and to hear the world around me overkill? Perhaps to some it is. However, these choices have helped me to cope, to interact, and to be a confident “hearing again” adult responsible for my own communication. If you are a person with hearing loss, you have chosen your own path, too. I respect that! I am grateful to be living in an age where so many options are available to people with hearing loss. Decide how you want to engage the world around you – and then OWN IT.

Do you use additional things to hear at your very best? Please feel free to share those options by commenting on this post.

Happy hearing!

Denise Portis

© 2013 Personal Hearing Loss Journal

Center for Disease Control. (2012). Hearing loss in children: Learning language. Retrieved April 20, 2012, from http://www.cdc.gov/ncbddd/hearingloss/language.html

Walk a Mile in My Shoes

Gonna change directions here today as the death of Whitney Houston coincides with something I am seeing more and more in the disability community.

It doesn’t matter whether or not you like Whitney Houston. What I am disappointed to see is some of the comments and “hatin’ on” this artist since her death. I actually saw on one person’s Facebook that drug addicts and alcoholics get what they deserve. “Someone with so much talent shouldn’t have wasted it”

Wow. I mean REALLY?

Unless you were thrust into fame and fortune at a relatively young age…

Unless you had to deal with the media on a daily basis, giving up any hope of privacy…

Unless you married for love and were crushed by disappointment…

Unless you raised a child as best you could in the backdrop of an industry that can be unforgiving…

Unless you developed an addiction because of life’s crushing problems and entered rehab while the whole world knew it…

Unless you made mistakes and fell back into bad habits – all while the whole world watched…

… then keep your mouth shut about Whitney Houston.

Why Does This Upset Me? Why Should it Upset YOU?

Anytime people begin to criticize and judge someone else a change takes place. Amnesia.

I rarely hear someone criticize and judge someone who is just like THEM. It usually happens when someone is different than you are. Criticizing is easy when we don’t walk in that person’s shoes. Judging is a simple task when we cannot hope to understand what really caused someone to do something when they are different than we are. We forget all the times we have been hurt for being judged and criticized by people who do not understand our own choices in life.

Wanna get me ticked off? Criticize and judge someone who chose to mitigate their disability with a service dog when you don’t live with a disability. Sometimes even others within the disability community may scratch their head and wonder why a person would choose a service dog when “they have the same disability you do”. What they may not know is that there ARE various differences between your disabilities. Your lives may be different. They may have 24/7 help that you do not have access to in your own life. Why don’t we celebrate “whatever works”?

In the hearing loss community, I know people who criticize people who don’t allow “nature to take its course” and embrace their deafness. To some, if you do not learn ASL then you are shunning a community that could be your family. For others who have accepted technology and/or surgery to stay connected to the hearing world, they may criticize those who have learned ASL for various reasons – personal reasons! I know people who criticize other people’s choices about hearing aids or cochlear implants. Why are we prone to criticize anyone who makes a different choice than what we have made for ourselves?

I think perhaps it is a form of self-protection. We may somehow feel that if someone who is very similar to us chose another path, that their choice may mean that our own path was a wrong one. It may be a form of defensiveness. If we see someone successful at living life with a disability, we may feel the need to criticize because we still have some problems with our own disability. If we see someone floundering at living life with a disability – and they chose another path? Many point and say, “I told you so”.

We could all learn to be more compassionate. We could all learn to listen more and keep our mouths shut.

When you judge another, you do not define them, you define yourself.” –
Wayne Dyer

If you judge people, you have no time to love them.” –
Mother Teresa

What May Happen if You Reserve Judgment

If you can keep your opinions to yourself, you may just make some discoveries:

You didn’t understand why they did what they did until you got to know them better.

You misunderstood their choice

After learning more about the person, you actually agree with their choice.

After time you find that you still would have done it differently yourself, but it seems to work for them.

If you can keep your negative opinions to yourself and instead pray for and encourage that person, you may discover a…

FRIEND who has the same taste in shoes!

Denise Portis

© 2012 Personal Hearing Loss Journal

Follow-up to “Community”

It’s so nice to have guest writers from time to time if not for any other reason, than to give you a break from me! Today I am posting a well-written and thought-provoking comment from Dr. M.E. Osborne, whom I share a “community” with at the Cochlear Community. Feel free to leave your comments (as always), and if you like I can forward personal messages to her via email.

Dr. M. E. Osborne

Denise : We are all thankful you are a member of the Cochlear Community. You bring us different, clear viewpoints and concepts to think about.

Your description of the grocery store incident put me there as if I had been a butterfly on the top shelf. Some thoughts flew instantly to mind, and others developed as I thought about the incident throughout the day.

FIRST: How sorry I am for the little boy; he is being taught prejudices. If a parent actively, consciously imparts a narrow connotation of “normal” – for 7 years – you know there are other interrelationship terms that are also skewed.

SECOND: I take it she also was hearing impaired and was referring to “normal” in the “deaf community” through her experiences and the results of the choices she made. By 7 years of age a child’s basic personality and framework of values are 80% set. But the input of details that determine our ability to make our own choices is only about 30% set [Kaugher, 2004] That little boy is on the cusp of making important choices for himself.

His language development is still open. Unless his parents permit his examination, it will be another 11 or 14 years [depending on “legal age for self-care” in the state where he is then living]. Those of us in the Cochlear Community each know at least three people who had no hearing until Cochlear Implant[s] happened. That might be case for that little boy. He would be eligible for speech/ auditory/ aural/ oral services. He might come to speak as clearly as a couple of Cochlear Volunteers. IF THE MOTHER’S ATTITUDE PREVAILS, HE WILL NOT HAVE THAT CHANCE EARLY IN HIS LIFE. HOW TRAGIC.

THIRD: You were SO much more polite than I would have been. I would have flown after her to “ask” her, HOW DARE SHE MAKE THAT IMPORTANT CHOICE FOR HIM!  No matter how I had to communicate – sign with the ASL I remember, spell words one letter at a time, or write it. She would understand my intense furor with her making life choices for another person.

She is exactly the type of parent who drives people in my chosen area of expertise out of our minds. She is afraid of technology and teaching that prejudice to a child, not describing options.

[For those of my Cochlear Cousins who do not know, one of my doctoral concentration areas is Special Education Administration. The program I completed was heavy in being an advocate for the client – especially for youngsters.]

Then I would have emphatically flown off into “WHAT IS ‘NORMAL’ IS SITUATIONAL.” The two of them “out in the usual world in a grocery store, using ASL to communicate,” was not normal right then – unless everyone in the store at the same time was using ASL

“Normal” implies behaviors, clothing, manners, foods, rules, customs etc. that are highly predominant among a group of people.

THERE IS NO ONE NORMAL FOR EVERYWHERE, ANYTIME.  I have lived both as a citizen and as a military member, literally around the world; traveled extensively on four continents, and have been privileged to be part of many social communities. Communities may be defined internally – people who have chosen to be self-segregated from interaction/ participation with those outside. Communities may be people forced to separate, by customs, laws, etc. Communities may be segregated from each other on some binding reason the members consider enough – an example is the “upstate homies” and the “downstate homies” in a juvenile prison.

While teaching in a southern city, I was accepted by the Deaf Community as one of them because I tutored/ taught the children. The same reason was in force in a northern city as I taught three young people for 6 years. Their three “accompanying interpreters” in public school, agreed to provide a concentrated ASL class for the 24 teachers involved.

What are perceived as communities, sometimes must merge, not just function, but each individual interact successfully. Consider the situation: Nancie was one of the school interpreters; Black; attending an active Catholic church with an almost total Black congregation, and the congregation kept many traditions of Black, southern churches – the Mother of the Church and the Sodality Members wore white, all other members wore navy blue, to any church service. Nancie’s mother passed away. The three students, the two other interpreters,  all 24 teachers, students close to the signing student’s, & the students’ families, piled into a school bus at the school located on the fringes of the city, to ride deep into the city,  down to the river. In the melee of people were Black, European, Hispanic, Jews, Catholics, Baptists, Methodists, hearing, partial hearing, and totally deaf. We were greeted and welcomed by the Priest and the Mother of the Church. You bet we had it together … because it meant something to Nancie, and us. We sat behind the Deaf Community – one of the two interpreters signed in the front – the other about in the middle, both up high enough to be seen. All teachers, families, etc were in navy blue dresses or suits. The Catholics spread out through the group to help the others get through a completely sung, old fashioned, high Mass. [For those of you who wonder, the cemetery was a short drive to the north. Yes, our bright yellow school bus was in it.]

Imagine the chaos, the pathos, the inflicted insults and injury had every individual clung only to what made them comfortable.

Currently I am in the USA, living in a SC rural area near an average small city, 50K people.  Permit me to list some things that might not be the norm, the usual, in public situations:

  • ASL, or for that matter, any language other than English;
  • an assistance dog, lemur, ferret, or tree monkey;
  • a lady who covers the left side of her head, but puts a finger in her right ear when eight F-16s go fly low, landing/ taking off.    [Guess who with a BAHA]
  • people using heavy, metal, leather braces and cup crutches;
  • families of 21 children;
  • people wearing clothing that openly indicates their choice of religion/ religious practices – Hutterite plain clothes, burqa, nuns in habits, yarmulke/ Kippah;
  • people with little screens on their head attached to a weird looking hearing thingy – you can see one on Rush Limbaugh.

Some things that here are the norm:

  • No matter the time of day, lots and lots of men and women in military uniforms for the Air Force or Army  [NOT Navy or Marines] Shaw AFBase is in Sumter, Ft. Jackson Training facility is in Columbia, and the 3rd Army is coming to Sumter piece by piece
  • Many large, off road capable, pick-ups with a full gun rack inside the back window of the cab. Often there is not a need to lock the truck, there are a couple sets of large barking teeth on guard
  • After people have been home from medical, banking, other “white-collar” jobs, welding shops, construction, several groups of motorcycle riders gather – Legion Riders, Sons of God, Hyundai Hots – each in a different huge, parking lot
  • Men and women who proudly have Concealed Weapons Permits, carry their handgun, and love to take them out [unload all] and compare. [Me too]

NONE OF THE LAST FOUR ITEMS WOULD BE “NORMAL” IN DOWNTOWN CHICAGO AND ZIP CODE 60625.

Thank Our Lord for people in the Cochlear Community who

  • chose to create and maintain an open, welcoming community
  • accept input from professionals, family, and friends in making decisions; and also welcome the prayers of us who offer them
  • respect and embrace the decisions community members make
  • have the personal courage – sometimes at the cost of pride – to ask for support from others who also live with Cochlear technology
  • encourage us who are slugging our way through our CI/Baha  journey by sharing in both disappointments and joys
  • are ready to show their own personal hearing technology to people – recently I listened to a campaign manager explain that a car magnet was worth 300 votes for a political candidate – so I was thinking,  can we assume every CI magnet explained will bring 300 more people to hearing ?  Maybe the person spoken to, maybe someone they talk to ?
  • belong to SEVERAL social communities and move comfortably from one to another – even if we make a mistake now and then – such as when I heard my name called in exasperation in Eastern Star meeting, and snapped to my feet, smartly made a Navy military about face, to attention, and said sharply, “Ma’am”. Wrong community. The response should have been to stand graciously, make a small bow, and say respectfully, “Worthy Matron.”
  • are not afraid to risk making new friendships, that begin in the ether of the Internet, and because of geography, might never move to in-person friendships.

Dr. M.E. Osborne

Not Santa’s Helper… TEACHER’s Helper

kathleen

When my daughter, Kyersten, started college this Fall, I had a brief moment of panic.  For 4 years, she has volunteered to be a “teacher’s aide” for me at school during hours she didn’t have other classes.  It’s really wonderful when your daughter is your teacher’s aide.  I didn’t have to worry about how she’d feel if I “bossed her around”. Smile.

Faced with a school year with no teacher’s aide, I put out a plea to my older students.  “HELP“!

I was surprised that a good number of students eagerly stepped forward to try to fill Kyersten’s shoes.  I could only chose one, and so went with who hit “reply” first.  I’m glad it was Kathleen.  Kathleen (pictured above) is one of my third year American Sign Language students.  She has been SUCH a big help this year.  As soon as she enters my classroom, she is in full “aide” mode.  She doesn’t even ask what needs done, as she figured out after the first class that the camera had to be set up for “Hot Seat”, (* see below), and without being asked she passes out graded work and new lecture notes to each student.

Kathleen didn’t even balk when I made a tiny “big deal” about a Christmas gift I had purchase for her, and even wore the HAT.  (Is that “game” or what?)

Over the past 7 years, I have learned to ask for assistance with much more grace.  If you have a disability and are “grumpy” about the fact you can’t do all you “use to”, then asking for help can be next to impossible.  Someone who is uncomfortable about asking for help, is not even a good candidate for an assistance dog.  Even assistance dogs like praise and the occasional treat.

n1143036281_30221118_5859 Chloe wouldn’t wear the hat, but was glad to pose by the tree.  She loves to work, but there are some things she can’t do for me.  She can’t pick up heavy books that I drop, and I don’t allow her to pick up things that would be dangerous for her.  An example would be that I broke a Christmas bulb when helping to decorate the tree.  I had to intervene quickly, as she has been taught an automatic retrieve (as most things I drop I don’t hear).  I obviously didn’t want her to pick up broken glass.  I had to ask one of my teens to help me.

In the grocery store today, I knocked over a huge box of Cheerios in the cereal isle.  I didn’t want canine teeth marks in the box.  It was big enough that Chloe would have had to exert some pressure to get it up high enough for me to reach it.  Instead, I allowed a person standing there watching to assist as they were eager to do so.  It was pretty easy for me to transition that to my classroom.  I’ve learned to ask my students for “help” when I drop something too heavy for Chloe to pick up.  My students never mind hopping out of their seats to help.

A big online THANK YOU to my 2008-2009 teacher’s aide, Kathleen. See you “next year”!

* HOT SEAT:  One student each week sits in an “interpreter’s chair” and listens to a pre-taped selection from which they are to sign all that they can.  They then take it home and choose 60 seconds to translate, practice and perform the following week.

Denise Portis

© 2008 Hearing Loss Journal

If You Want Me To

Since I recently posted about getting my daughter, Kyersten, ready for college… I wanted to follow-up with a very special post.

Kyersten is an incredible young lady.  I realize I’m “her mom”, but those who know her can tell you that she is very special.  I really look forward to the coming years to see how she continues to grow and mature!

Kyersten has always loved sign language, and grew up as a wonderful CODA (children of deaf adults).  She was a big help to me prior to my cochlear implantation, and has been an interpreter in our church and served in deaf ministries for a number of years.  She has taken 5 levels of sign language, and frankly I can’t teach her much more than I have.  Like me, she recognizes and respects the differences between those who cannot hear and use sign, and those who chose to be oral like myself.  (I know sign and even teach it.  I don’t use it in my everyday life, however, as everyone I know has normal hearing).

She has had a tough week.  A great number of emotional things have happened, and she’s learned some very hard lessons about people.  I wanted to share a video she had taped this week.  The song is by Ginny Owens, and I’ve captioned it for those of you who do not hear well.  Enjoy!

Denise Portis

© Hearing Loss Journal