Additional Information on "Silent E" Post

If you read the post I made before this one you’ll notice I mentioned the silent E. I’m starting to better understand the concept that there are more than just 26 sounds in the English language.

I was always aware of long and short vowels…that sort of stuff. However, it’s one thing to know something and another thing to understand it.

I was thinking about it a bit more after I posted. I then did a quick google. There are 44 phonic sounds in the English language and only 26 letters to “represent” those sounds. No wonder people don’t understand my speech when I pronounce words the way they’re written.

Now, to figure out how to learn spoken English with a different perspective….if it’s even possible?

Noise Pollution, Silent E, Rash, and 180 degrees

I know I haven’t blogged in a while. As you all know December can get a bit crazy at times. I had a great Christmas with friends and family.

I’m going to touch on a few topics that came up recently in discussions with friends.

Noise Pollution

There are days where I really appreciate my CI then there are days where I feel the CI is worthless. I have realized that those moments where I feel the CI is worthless is when there’s background noise. With hearing aids I generally would pick out maybe two noises at the same time (all the noises blending together would form one noise and then a person talking next to me would be the second noise). I never really understood why people complained about background noise.

Now I understand.

And it drives me bonkers.

I now hear so much more and am still trying to figure out how to break that huge tangle of sounds down so I can hear a certain person talking. For example, in a restaurant…I may hear conversations overlapping, kitchen noises, forks clanking on dishes, vehicles driving by outside, air condition/furnace, people behind me talking, people besides me talking, people walking past me, babies crying, chairs, etc.

Now, how in the world can I pick out which sound is which? It usually takes me a while to pinpoint what is what. In cases like this I rely almost entirely on either lipreading or sign language.

I have noticed recently that I can pick out the waiter/waitress’ voices and the voices of people who are sitting directly next to me about 50% of the time. This compares to 0% the first few months I got the CI.

It just constantly amazes me how noisy this world is. Especially when a person next to me is on the phone and I can hear the voice of the person they’re talking to.

Silent E

I never really understood the concept of silent Es. I pronounce words as I see them. Meaning that when I speak…I visualize the word in my mind and pronounce each letter. Growing up, I used to complain about silent Es all the time because I was always being corrected for saying E’s when I wasn’t supposed to. What was the purpose of Es if you didn’t even say the E while pronouncing the word?!?

I decided to look something up about silent Es the other day and I finally understand the purpose of it.

I’m starting to appreciate the complexity of our spoken language. Even though I knew about phonetics and was expected to memorize the rules in school….it didn’t mean I necessary understood. I’m starting to understand a bit better. My general line of reasoning was that if there are 26 letters then there should only be 26 sounds. I didn’t always understand the long and short vowels or how certain combinations of 2 letters created a specific sound rather than 2 different sounds.

I still pronounce words the way they’re written….a bit tough to change that 20+ years habit. However, I am starting to understand why people struggle to understand my speech and why people sometimes spell words incorrectly based on how they hear them (e.g. two/to/too).

I feel like I’m doing it backwards. Most people grow up learning spoken language and then they learn how to simplify it in written language. I grew up with written language and am just now starting to understand how each written letter almost oversimplifies our spoken language…if that makes any sense.

Rash

I have been working on an auditory training program on and off for a bit. More details on that at some point.

Anyways, my primary goal with the CI is to improve my lipreading ability with auditory input. I have mentioned many times…I have never ever understood words (aside from ok, yes, no, and occasionally my name) without lipreading. I have been deaf every single minute of my life both in and out of the womb. At age 26, is it really possible to have a realistic goal of understanding spoken language without any lipreading?

It’s pretty far fetched.

I have been surprise that I’ve understood 4 random words without lipreading in the past 9 months. More than I ever expected. The word that caught me by surprise happened a couple of weeks ago.

The first 3 words I understood without lipreading…I did have some additional clues (e.g. knowledge of topic being discussed, awareness of the situation, etc.) which helped out. However, I had no clue whatsoever for this particular word…not even a closed set list or context or sentence. NOTHING.

I was doing a specific auditory training exercise on the computer where 3 words are spoken and you have to pick which one sounds differently. It forces you to really listen and learn how to listen.

I think they may use different speakers sometimes too which makes it tough (not 100% sure though).

Anyways, you don’t know which words are said unless you miss them. You have no idea what sort of words are being said except that they are usually simple words with vowels in the middle.

Some examples:
Hoot, Hot, Hot
Veal, Veal, Val
Sass, Sauce, Sauce
Hog, Hug, Hug
Conn, Conn, Cone

I was listening to a set of 3 words and I missed it. Every once in a while I’ll try and see if I can guess which letters are present. I guessed rash without really thinking about it or any hints as to what sort of word was being said.

I actually got it right. How about that?!? 🙂

180 Degrees

Earlier this year I went to Colorado to do some camping and hiking. I had blogged about how I didn’t really want to mess with the CI on that trip. I almost didn’t bring it with me but in the end I did.

I’m leaving for Colorado Wednesday to go snowboarding with a few friends. I don’t wear my CI when snowboarding because…it’s so easy to lose the CI when you’re likely to wipe out while snowboarding 😉

I actually found myself thinking that I wasn’t thrilled with the idea of going practically all day for a week and half without wearing the CI. A full turnaround from how I felt when I went to Colorado over the summer!

Yet another sign that after 9 months…I’m so much more comfortable with the CI.

I may not be able to blog for a couple of weeks. Hope you all have a wonderful and safe New Year’s!

DNA Exchange Blog Post #4: Practicing What We Preach: Genetic Counselors, Disability, and Advocacy

Below is my most recent DNA Exchange blog post. Practicing What We Preach: Genetic Counselors, Disability, and Advocacy

If you want to follow the comments/discussion on this blog post go here.

Disclaimer: I do not consider my deafness a disability, however, society defines it as a disability. Therefore, I utilize quote marks and refer to it as “disability.”

As genetic counselors we are trained to respect and advocate for patients. We are also trained to not to make pre-assumptions about their strengths, skills, and weaknesses. Our training doesn’t always seem to apply outside of the counselor-patient setting.
As a deaf person, I knew it would be a difficult journey when I first applied to genetic counseling programs. Little did I know how difficult it would be as a deaf person to find my place in this profession. Genetic counselors learn about many different genetic conditions and work with many people who have various genetic conditions. Oftentimes these genetic conditions fall under the category that society labels “disabilities.” Even though I do not consider myself to have a “disability,” other genetic counselors sometimes took a different view.
Here are just a few of the barriers I have faced in this field because of my deafness:
• I have been rejected from genetic counseling programs solely because I was deaf.
• When I was invited for interviews for genetic counseling programs, I didn’t always have an interpreter available for the whole interview.
• I was told by rotation supervisors that deaf people should not be genetic counselors.
The list goes on and on but my personal struggles are not the main focus of this post. I just used some of my personal experiences to serve as examples.
Fortunately, these attitudes are not universal among all genetic counselors. I have had some positive experiences during my brief career. For example, I have never had people advocate for me as much as some groups within this field have. It wasn’t until I started graduate school that, for the first time in my life, I truly felt like there were people out there who did want to see me succeed and were willing to go out of their way to advocate for me.
The barriers I have faced within this profession has made me question how genetic counselors truly view people with “disabilities.” It has made me question if genetic counselors feel equal or above their patients who have “disabilities.” Do genetic counselors serve as advocates because of some sort of deep need to help “poor unfortunates” or do they like being in the helper role and not because they truly want to see their patients be successful? This is a very difficult question to ask of the profession and of ourselves.
I am playing the role of the devil’s advocate here. This is not intended to be an attack against the genetic counseling profession. Rather this post is intended to hopefully encourage genetic counselors to question why they may advocate for a person if they’re a patient but not if they’re not a patient. What does it tell us about ourselves? Why does it appear that the role of serving as advocates have boundaries? Where are those boundaries? Should there even be boundaries?
Does it mean society’s attitude towards people with “disabilities” is so powerful and ingrained in us that we have to be specifically trained how to advocate and be on neutral grounds when counseling patients? Does it mean our training is not good enough for it to cross over in all other aspects of our profession?
Is it that “disability” seems to go hand in hand with being a patient and it’s hard to separate those two? Is it time to change our perspectives of people with “disabilities” to more than just patients?
I know it is possible for genetic counselors to pull together and advocate for other people. My question is why doesn’t this happen on a more consistent basis?
Do genetic counselors need to analyze their perspectives on “disabilities” more thoroughly? How can this be done? I would love to see this profession become more welcoming to those with “disabilities” instead of constantly questioning their ability. Oftentimes what one may see as a “disability” is that person’s strength.
I have seen this profession make attempts to make this field more diverse. Usually diversity is thought to include people from different socioeconomic, ethnic, and religion background. Why can’t diversity include people with “disabilities?”
I have learned so much from people within this field who have pulled together to advocate for me when the profession tried to work against me. I want to make this field more accessible to people with “disabilities.” I want to pay forward what I have been given.
I genuinely want to hear your opinion regarding this topic. It’s the only way I can start to understand why there are so many barriers within this profession and why we only seem to apply our training in certain settings (e.g. patients vs. professionals).
Changes won’t happen until we understand. To understand something, we need to explore and question things.

Heading to St. Louis

Lately, it seems like weekends have been crammed full of fun activities. I’m not complaining! 🙂

Work hard, play hard.

Last weekend I went to the KU women’s basketball game with Alex, Vic, Sarah, Mat, and Dennis. A bunch of us got together at our usual place, BW3, for the KU-UCLA men basketball game. Thrown in somewhere there was a holiday party which I mentioned a couple of posts ago.

I also went to the local school for the Deaf’s women volleyball open gym. Will have to blog about that at a later note. Actually, I think I need to go back and blog about everything I keep saying I’ll post more at a later time. 🙂

Am just typing up a quick post while I download some music videos onto my iTouch. Dennis and I are heading to St. Louis for the weekend. I’m going to go snowboarding with some friends Sunday afternoon. Yay! 🙂

Well, gotta run! Have a great weekend!

Top of The World

This picture is my laptop’s background. It seems so surreal whenever I look at it.

To literally almost be on top of the world is an amazing feeling. Not very many people get the opportunity to physically experience this.

Mount Yale.
14,196 feet.
#33 highest mountain peak in the USA (including those crazy 20,000 feet Alaska mountains). There are only 45 mountains in the USA that are 14,000 feet or more.

It wasn’t just being on top…it was the hike itself. That was the toughest hike I ever did. After that I felt like I could do anything.

It was ridiculously steep. You can see Dennis at the top which should give a general idea of how steep it was. This picture doesn’t do it justice.

I had the WORST blisters ever on my heels before we even started the hike. It was raw, bleeding, and very very very painful. I rarely take painkiller pills but had to take them on the hike. I came close to tears a couple of times because of the pain level. They actually haven’t 100% completely healed yet. They’re about 99% healed…and it’s been 5 months. I have the scars to prove it. 😉 A couple of people were actually very concerned they wouldn’t heal properly because they were so deep.

My asthma did not want to cooperate with me. I started wheezing once we got around 12,000 feet.

My knee. *laughs* Let’s just say I’m not sure why the heck I hiked with a loose kneecap (I didn’t realize it was loose at that time…all I knew was that it hurt with every single step I took). It took a couple of months for it to heal.

That was probably the biggest physical challenge I’ve had to date. What got me through it? How did I make it to the top and back down all on my own?

It was my attitude. It was how I took one step at a time (literally) instead of getting discouraged. It was how I just kept telling myself I would do my best and what happens, happens.

Amazing what a person can do when they set their mind to it and take one step at a time.

It wasn’t just me. Tara and Dennis twisted their ankles and had to hike back down on their twisted ankles. It was awesome to see that everyone else had a great attitude too.

I think about that hike from time to time.

Would I do it again? Yes, but I would be smarter next time. I would bring warmer clothes for one thing. I would be more aware of my limitations with injures…I really should not have done the hike with that bum knee.

But…..oh, it was SO worth it. 😀

Trust Me, I Really Can’t Hear

I went to a holiday party last night and had a good time. There were about 60 deaf/hoh/interpreters. Anyways, at some point I got asked by a deaf person if I was hearing.

This happens at every single deaf event I go to. People are convinced that I’m either hearing or hard-of-hearing. I guess I don’t quite fully understand why I apparently “look” hearing.

What is it that makes a person appear hearing or appear deaf?

Is it the way they sign? Is it their mannerism?

What is it that makes me look hearing? In reality I probably grew up with more hearing loss than at least 2/3 of deaf people at deaf events. I by far do NOT consider myself oral.

Why does it even matter?

Anyways, this always makes me think of how I have found myself in situations where I have to convince hearing people that I am really deaf. This has always made me question the idea that people assume all disabilities are visual. If they can’t see the disability then you don’t have it. If they can’t see what’s wrong with you then you must be faking it. A couple of examples.

Example #1: I was on a volleyball team in high school and one of my teammate was 100% convinced that I was hearing. All season long she would try different things to show everyone that I was faking being deaf. She would always stand behind me and start talking right in my ear. The thing she didn’t quite understand was that I could hear her voice with the hearing aids so I would always turn around when I heard her. She would then announce to others that I was just wearing hearing aids for the heck of it and I was really hearing.

Example #2: My 3rd year at KU I had 3 roommates who were all hearing. One of them was 100% sure I was faking being deaf. She was completely sure I was hearing the whole first semester even though I never used my speech with her, I wrote things down/gesture/IM to communicate with her, slept through fire alarms, and even though I walked around wearing my several thousand dollars hearing aids.

I was always (and am still) not quite sure why hearing people think I fake being deaf. The only thing I can think of is….society has such a strong image of what people with “disability” look like and what they can do. By being mainstreamed and having an “invisible disability”…..I must somehow go against everything they thought they knew about people with “disabilities.”

Trust me, I really can’t hear….I’m not faking it. 🙂

Facebook

I keep meaning to make a post about the impact facebook, e-mailing, and instant messaging has had on the deaf community.

Maybe I’ll get around to that someday.

In the meantime….I just realized I’ve been on facebook for about 5 years which means about 1/5 of my life is on facebook. Not sure how I feel about that. 😉

Random Sounds

Some random rambling about sounds I’ve heard lately. Nothing too exciting but maybe it’ll illustrate how even after all these months I’m still getting used to environmental sounds.

—I was over at Seth’s the other night with Jimmy and Dennis. Seth cooked us dinner (yum!). The 4 of us were in the living room eating dinner when I heard what I thought was water running. I was a bit confused because we were all in the living room and thought I had misidentified the sound. I started to look around and then I realized I was hearing rainfall on Planet Earth on TV.

—On my way home last night I had to stop at a train crossing for a very long and slow train. I kept waiting to hear the train whistle since I hadn’t heard it close up with the CI yet. It about blew me out of my seat. Let’s just say I quickly learned that I really don’t like the sound of a train whistle from 15 feet away. By the 3rd whistle I took the CI off until I was sure there would be no more whistles from that distance. I then put it back on just in time to hear the “low gas” chime which made me jump a few inches since I was still recovering from the train whistle.

–It’s been fascinating to me how different voices sound especially on a TV show when you have multiple people talking. I do have to say that people who make commercials know what they’re doing. I definitely look up more often when a commercial comes on vs a TV show because of the voices. I think the most annoying voices up to this point are newscasters for some reason.

–Another thing I’ve noticed when I listen to my iTouch is that sometimes when I try to guess which song I’m listening to….I get the song wrong but I get the musician correct. There have been a few times where I think I’m listening to the beginning of a certain song then I realize I don’t recognize the song but when I go to check what song it is….I have the correct musician.

Bambi

Bambi.

I can’t remember ever seeing this movie all the way through with captions. Part of that reason is because of my personality.

Anyone who knows me knows I’m not a big movie person in general. It’s not often I finish movies in one sitting unless I’m with a group of friends and I have no other choice. 🙂

Another reason is because watching Bambi without captions was one of the first times I clearly remember feeling completely excluded.

I was 4 or 5 years old when Bambi was re-released in the theaters. I happened to be with my uncle and aunt when they decided to see this movie with their 3 daughters (my cousins). Two of them were older than me and one was younger than me.

I remember slightly dreading going to see this movie. Even at a young age I knew it wouldn’t be captioned. Then on top of that I knew I would be expected to sit there quietly in the dark for an hour and half.

Rent a cartoon movie you have never seen and try to lipread cartoon characters without the sound on….then tell me how much you enjoyed the storyline. 😉 Cartoon characters are a bit impossible to lipread when you have no auditory input.

The thing I never understood when I was young was why people didn’t grasp the concept of how important captions were to me. I think they felt that the age of 4-5 that I should just be learning how to read and that there was no way I could read the captions. Wrong! 🙂

I figured they thought I would be able to enjoy it because it was so visual. I decided to try that approach. It didn’t help that I was one of those kids who would bounce off walls if you let me, I liked to multi-task, and I liked movies with lots of things going on. Bambi was a bit slow paced. For me to enjoy slow-paced movies as a kid I really needed to know the storyline for it to keep my attention.

I looked up to my cousins and I knew they were excited about this movie. I knew my aunt and uncle wanted to include me with their family outing and thought this would be something I would enjoy. I decided to just go with the flow and try to make the most out of it.

By the end of the movie….I felt so excluded. I couldn’t understand the storyline. I couldn’t follow my cousins’ conversations about it afterward. All I remember is that I didn’t want to see a movie in the theater again for a long time. I didn’t want to make my aunt and uncle feel bad because I knew this was a treat so I was trying to act like I enjoyed some of it.

One thing I do remember.

My favorite character in that movie was not Bambi who was all of my friends’ favorite character….my favorite character was:

THUMPER!

I loved that little guy. Every time I became frustrated at trying to stay quiet, sit still, and watch a movie I couldn’t understand….Thumper was always there to make me smile.

The little guy had the cutest facial expressions, cute little nose that twitched, was full of energy, and of course I loved when he would thump his back foot.

That was always kind of my approach when I knew I would find myself in a situation where I might feel excluded. I would find something small that I found entertaining. The thing is that this approach gave me an unique perspective on things. I saw things that no one else saw.

The Pink Elephant in the Room

I have always been a bit wary about posting some of my childhood experiences with extended family members. The LAST thing I want to do is hurt my family’s feelings….when that is not my intention. I just don’t want what I’m saying to be taken out of context.

I also feel it’s important for me to say how I feel because I’ve always felt like I had to hide how I was feeling and just put a big old smile on my face no matter how I was feeling.

Now that I am older, I am more aware of what I could have done differently myself in terms of breaking down communication barriers with relatives. I’m still not always sure what the best way to go about doing this is.

I guess honestly in a way I do avoid communicating with some extended family members because I felt rejected as a young child when I tried different ways to break down communication barriers with some relatives. Now that I am older I understand they were just uncomfortable with doing things differently which is human nature. I understand a bit better that I was probably the only deaf person they interacted with and most of them lived in small towns where there weren’t deaf people. Since I only saw them a couple of times a year…that meant they were thrown off whenever they saw me and didn’t know what to do with me.

I do put up walls when it comes to communicating with some family members because I have been hurt in the past when trying to break those barriers down. I know they didn’t mean to make me feel hurt and they probably didn’t even realize it. However, there is nothing more hurtful than trying to gesture, use my speech, and write back/forth with a relative…then seeing how uncomfortable they look around me and watching them walk off without trying to reply back because I put them out of their comfort zone. Also when they seemed frustrated with me because I couldn’t understand them the first time they said something to me.

That. Hurts.

Especially when you’re just a kid and you don’t fully understand how someone can say they love you and give you hugs….then they become uncomfortable when you try to communicate with them. They don’t call you on your birthday like they call all other family members. They don’t ask you about your dreams for the future but they ask everyone else. When they don’t bother to take the time to tell you where they’re going when you’re out for a ride with them. When they don’t feel comfortable receiving relay phone calls from you. When they get frustrated with you because your speech is not clear and you didn’t catch what they said the first time. When they won’t even tap you on your shoulders to let you know they’re talking to you. When they haven’t seen you in a year and they won’t contact you when they’re visiting the city you live in.

I do regret that I put up these walls and I have been trying to figure out the best way to go about tearing down these defensive walls of my own. Since I graduated from graduate school and moved back home…things have gotten better. Family members have tried to talk directly to me and they seem more aware of things like 1) only 30-35% of the English language is readable on the lips 2) tapping me on my shoulders to get my attention 3) more comfortable writing back and forth with me. This last past year and half has probably been the most positive interactions I’ve had with some extended family members.

I think a big reason for that is that I’ve been trying to get rid of the Pink Elephant in the room. I finally realized a few years ago that just because they have known me, a deaf person, for 26 years doesn’t mean they really know what being deaf is about. I’ve always felt like they were uncomfortable asking me questions because they didn’t want to insult me or say the wrong thing. They cared about me and were afraid of hurting my feelings in that way which is a bit ironic because by taking that approach they were hurting my feelings in other ways.

I have noticed that the more I open up about my cochlear implant, life experiences as a deaf person, tips (e.g. tapping my shoulders to get my attention), etc. The more comfortable they have became with me and that Pink Elephant has slowly been disappearing.

Don’t get me wrong. The Pink Elephant is still there but it’s not as visible….however….for the first time I feel like it is slowly starting become less visible. It seems like for the first time that some relatives are starting to become more comfortable around me and they’re more comfortable asking me questions they’ve always been curious about life as a deaf person.

I have learned that the best way to get to know family members is not at Thanksgiving, Christmas, or any big gatherings. Rather, the best way is to meet up with a couple of them for lunch. It makes it much easier for both sides to communicate with each other instead of when there’s chaos going on and there’s a large group of people.

One of my new year’s resolution is to start asking family members if they want to go out for a quick lunch…a couple of them at a time after all the holiday craziness is over with…and just get through the holiday gatherings for now. It makes a world of difference when I’m with just a couple of them at a time rather than feeling completely lost at family gatherings.