Captioned, of course!
My accent won't be precisely the same as other deaf people who choose to speak oral English, but it's still an accent--not a speech impediment.
Monday, February 25, 2013
My Deaf Accent
My accent won't be precisely the same as other deaf people who choose to speak oral English, but it's still an accent--not a speech impediment.
Friday, February 22, 2013
Flying as a deaf minor (pre September 11th)
When I was 16, my parents allowed me to visit my BFF who recently moved to Pittsburgh, PA. I was excited about being able to travel without my parents. How hard is it to fly? All you do is follow your ticket information. Gate B40, layover for an hour, Land at your destination. I had one layover that didn't involve a gate change and all I had to do was wait on the plane. Everything went perfect, I landed in Pittsburgh safe and sound.
Except it wasn't Pittsburgh.
Here's what happened:
After the layover, we were in the air for awhile and the flight made an intercom announcements about mechanical difficulties, they would be landing and we needed to switch planes in Detroit. Despite being a minor, despite my passenger information saying, "deaf passenger-- reads lips," there were zero attempts made by the airline employees to personally relay the information to me and make sure I knew what was going on. I didn't ask questions because it wasn't an expected complication. Surely airline employees would talk to a minor if there were any news to share? Talk about assumptions gone wrong.
We landed in "Pittsburgh" and I observed multiple passengers head towards another gate, "Hmm, that's odd." but I rationalized, "they must be flying somewhere else." My BFF and her stepmother weren't waiting for me at the gates (which was allowed before 2001) and so I figured they were running late. I searched for signs to see which airport I was in because I was suspicious about my location, but I thought: wouldn't someone have told me what was going on?
Back then, they made intercom announcements for which airport you were in. I couldn't find any signs telling me where I was, no gigantic advertisement welcoming me to wonderful Detroit. The only signs I could find were for luggage pickup. I reached the luggage area and saw a handful of people waiting. This also struck me as odd. It was a tiny plane but there should've been more than 10 people flying to Pittsburgh from Southern California. After the last person grabbed their luggage, my bag was no where to be found. I was alone.
I walked around to search for any type of information/guest service booth, which wasn't easy to find. I ended up going to a lost luggage booth.
"Hey uhh, which airport am I in?"
"Detroit."
"Detroit?? I'm supposed to be in Pittsburgh"
(gets information) " That plane already left. You're just going have to get a hotel and catch a flight tomorrow"
"Um...ok...how?"
"What do you mean how? Call a hotel--wait, how old are you?"
"I'm 16"
"Oh! I see. Give me a minute and we'll get this fixed."
Even if I had a cell-phone, I wouldn't have been able to talk to my parents. I could've called them, but they wouldn't be able to say anything back to me. I had to rely on an airport employee to make all the phone calls for me. Everyone eventually knew what was going on and where I was. Once communication was settled, I was taken to the kids room at the airport. I wasn't the first, only, or last kid to end up needing to stay at an airport overnight (canceled flights or missed layovers). The next day, the airport made sure I got to my gate even with the snowstorm postponing flights.
It was an embarrassing experience because I wasn't happy with the complications that occurred the first time I ever traveled alone. I should have been able to travel solo without relying on anybody else.
Nowdays, that's definitely true. There's digital information about flights, what airport you're in, what time it is, if a flight has been delayed/canceled/postponed/moved to another gate, all that stuff is right in front of you inside airports. Just look up for gigantic television screens and you're good to go.
Despite all the modern day annoyances of getting through an airport, with all the increasing use of technology for personal and business purposes, I prefer traveling today compared to a decade ago.
Except it wasn't Pittsburgh.
Here's what happened:
After the layover, we were in the air for awhile and the flight made an intercom announcements about mechanical difficulties, they would be landing and we needed to switch planes in Detroit. Despite being a minor, despite my passenger information saying, "deaf passenger-- reads lips," there were zero attempts made by the airline employees to personally relay the information to me and make sure I knew what was going on. I didn't ask questions because it wasn't an expected complication. Surely airline employees would talk to a minor if there were any news to share? Talk about assumptions gone wrong.
We landed in "Pittsburgh" and I observed multiple passengers head towards another gate, "Hmm, that's odd." but I rationalized, "they must be flying somewhere else." My BFF and her stepmother weren't waiting for me at the gates (which was allowed before 2001) and so I figured they were running late. I searched for signs to see which airport I was in because I was suspicious about my location, but I thought: wouldn't someone have told me what was going on?
Back then, they made intercom announcements for which airport you were in. I couldn't find any signs telling me where I was, no gigantic advertisement welcoming me to wonderful Detroit. The only signs I could find were for luggage pickup. I reached the luggage area and saw a handful of people waiting. This also struck me as odd. It was a tiny plane but there should've been more than 10 people flying to Pittsburgh from Southern California. After the last person grabbed their luggage, my bag was no where to be found. I was alone.
I walked around to search for any type of information/guest service booth, which wasn't easy to find. I ended up going to a lost luggage booth.
"Hey uhh, which airport am I in?"
"Detroit."
"Detroit?? I'm supposed to be in Pittsburgh"
(gets information) " That plane already left. You're just going have to get a hotel and catch a flight tomorrow"
"Um...ok...how?"
"What do you mean how? Call a hotel--wait, how old are you?"
"I'm 16"
"Oh! I see. Give me a minute and we'll get this fixed."
Even if I had a cell-phone, I wouldn't have been able to talk to my parents. I could've called them, but they wouldn't be able to say anything back to me. I had to rely on an airport employee to make all the phone calls for me. Everyone eventually knew what was going on and where I was. Once communication was settled, I was taken to the kids room at the airport. I wasn't the first, only, or last kid to end up needing to stay at an airport overnight (canceled flights or missed layovers). The next day, the airport made sure I got to my gate even with the snowstorm postponing flights.
It was an embarrassing experience because I wasn't happy with the complications that occurred the first time I ever traveled alone. I should have been able to travel solo without relying on anybody else.
Nowdays, that's definitely true. There's digital information about flights, what airport you're in, what time it is, if a flight has been delayed/canceled/postponed/moved to another gate, all that stuff is right in front of you inside airports. Just look up for gigantic television screens and you're good to go.
Despite all the modern day annoyances of getting through an airport, with all the increasing use of technology for personal and business purposes, I prefer traveling today compared to a decade ago.
Sunday, February 17, 2013
How To Train Your Ear (Brain)
Over the next few months, I will slowly re-implement individual training sessions to help me process sounds. This is not something insurance can help me do. They do not have any beneficial resources for me on account of already having speech skills. I do have a deaf accent, but that doesn't bother me.
I was advised by audiologists to practice listening skills by either listening to audio tapes while reading along with a physical book, or to re-play a movie scene and listen without captions so I can potentially train myself to file the words into a miscellaneous brain cabinet. Perhaps over time, my brain will unlock the cabinet and recognize that word when somebody else speaks it.
Have you ever tried listening to someone to identify all the little words? When that happens, your brain would lose focus of the message behind their speech. When people speak, you wouldn't pay attention to the "for" the "but" the "into" or the "THE" type of filler words. You'd listen for the overall concept and don't think about the exact words being spoken. To make a generalized statement: Listening is effortless for hearing people. When I listen to them, I'm trying to latch onto any word, then I piece the parts together to determine the topic/point. The puzzles don't always fit together into something that makes sense.
What I'd like to do soon is visit the nearby library for free audio tapes and also check-out the physical (or electronic) book and re-start the painful process of listening to words. As it currently stands, I can occasionally understand words when I focus intensely, but I lack the ability to remember anything being spoken. What's the point of understanding sound if you can't remember it seconds later?
My brain is just not used to simultaneously listening and memorizing speech. I can read lips and remember the speech (although it isn't an accurate memory because I only pick up pieces of words), but I can't remember a darn thing when I focus on the sounds. Because of that, I haven't practiced active listening in some time. But that's part of what this blog is for: to restart various training (including ASL) and update along the way.
I was advised by audiologists to practice listening skills by either listening to audio tapes while reading along with a physical book, or to re-play a movie scene and listen without captions so I can potentially train myself to file the words into a miscellaneous brain cabinet. Perhaps over time, my brain will unlock the cabinet and recognize that word when somebody else speaks it.
Have you ever tried listening to someone to identify all the little words? When that happens, your brain would lose focus of the message behind their speech. When people speak, you wouldn't pay attention to the "for" the "but" the "into" or the "THE" type of filler words. You'd listen for the overall concept and don't think about the exact words being spoken. To make a generalized statement: Listening is effortless for hearing people. When I listen to them, I'm trying to latch onto any word, then I piece the parts together to determine the topic/point. The puzzles don't always fit together into something that makes sense.
What I'd like to do soon is visit the nearby library for free audio tapes and also check-out the physical (or electronic) book and re-start the painful process of listening to words. As it currently stands, I can occasionally understand words when I focus intensely, but I lack the ability to remember anything being spoken. What's the point of understanding sound if you can't remember it seconds later?
My brain is just not used to simultaneously listening and memorizing speech. I can read lips and remember the speech (although it isn't an accurate memory because I only pick up pieces of words), but I can't remember a darn thing when I focus on the sounds. Because of that, I haven't practiced active listening in some time. But that's part of what this blog is for: to restart various training (including ASL) and update along the way.
The Hearing Vs Deaf Debate
How deaf people can say hearing is not better. I've never met anyone who doesn't love music.
Because being able to hear sounds doesn't mean you understand it. Once you take off the CI, you're back to being deaf again. When will that happen? While asleep, while showering or swimming, if it breaks and you're waiting for it to be repaired, when you run out of batteries and can't afford to replace them (they're not cheap, not covered by insurance), when the processor itself dies and you can't afford the 8k out of pocket for a new one (insurance doesn't cover it), or who knows, what if the internal parts stop working?
I enjoy music, but not the isolation I feel around hearing people-- I can't understand them because it's like they're all speaking a foreign language. I hear them just fine, though. How well someone learns to process sounds with the CI will vary, but regardless, it's all the same result when the processor is taken off the head: back to silence.
I don't see anything wrong with hearing devices as long as it's a bilingual home. I do see something wrong with denying deaf children ASL because it's assumed the device will work perfect. It's a lot of pain and frustration to go through speech therapy, audiologist appointments, training, to wait and hope for the best that maybe someday it'll work fantastic--it's a slow, long road to get there with absolutely no guarantees, with a lot of difficulties trying to fit into the hearing world. When you don't have access to a "time-out" (ASL) where all you get to do is understand 100% of what's going on, it makes the struggles more difficult and isolating because nobody else is going through it--only you. This goes whether the person has hearing aids or Cochlear Implants. There are many frustrations a deaf child goes through. Hearing parents may have their own frustrations raising deaf/hoh children, but it pales in comparison.
Ever notice when you read stories/opinions about CI, it's primarily from friends/family of the person with the CI? The hearing people profess what an amazing difference the CI has made for their cousin/friend/classmate. It's really not up to them to share what a "success" the CI was for that other person. The ones with the CI should speak for themselves. They may not say anything negative, but how well it works should not be defined by hearing people.
And how well a CI works/does not work is also not defined by any single individual with a CI, either. There are many stories out there.
Saturday, February 16, 2013
Q&A: How do you make phone calls?
How do you make telephone calls? Do you have hearing people call for you?
The short answer is to say I don't make phone calls to have conversations with friends. It's always a business purpose and with a text-based phone system.
The long answer is to say I don't use the phone the way hearing people do, but I can make phone calls. I have used a voice carry over phone in the past but nowdays I use an internet relay service. I type through a web browser or phone app, operator voices my text to "Bob" and operator will type to me what Bob said.
I asked my friend to participate in a sample conversation and she made a classic mistake. If you receive a call from a deaf/hoh person using relay phone call, speak TO them, not AT them.
"Tell her..." is a big no-no, it's rude and disrespectful. You're speaking to me, you're not having a conversation to the operator, I'm right there speaking to you in almost real-time (there is a lag during the relay process) but this mistake happens with almost every phone call I make to businesses and even with friends/family. What drives people to do this? When people speak to a German person using a translator/interpreter, do they look at the German, or the interpreter?
The short answer is to say I don't make phone calls to have conversations with friends. It's always a business purpose and with a text-based phone system.
The long answer is to say I don't use the phone the way hearing people do, but I can make phone calls. I have used a voice carry over phone in the past but nowdays I use an internet relay service. I type through a web browser or phone app, operator voices my text to "Bob" and operator will type to me what Bob said.
I asked my friend to participate in a sample conversation and she made a classic mistake. If you receive a call from a deaf/hoh person using relay phone call, speak TO them, not AT them.
"Tell her..." is a big no-no, it's rude and disrespectful. You're speaking to me, you're not having a conversation to the operator, I'm right there speaking to you in almost real-time (there is a lag during the relay process) but this mistake happens with almost every phone call I make to businesses and even with friends/family. What drives people to do this? When people speak to a German person using a translator/interpreter, do they look at the German, or the interpreter?
This conversation might be hard to follow after the fact, but it's easy to follow along while you're on the phone because the new text scrolls down.
GA = "Go Ahead
SK = "Stop keying"
I have used hearing people to make phone calls for me simply because they can get the task accomplished faster and without the risk of being hung up on or businesses refusing to speak to me. It's actually against ADA to refuse phone calls from deaf people using relay service, but most businesses don't know this is discrimination and illegal. It's frustrating because half the time, the only way I can get anything done is by going into the business in person--I should be able to handle my business tasks with the same access as hearing people, but that's not the case. Using a hearing person to handle my phone calls is also frustrating. Despite being there in front of them, inevitably, something I want to say gets left out because I'm not in control of how the conversation goes or when it ends.
So that's how I make phone calls. It's a combination of text-based relay calls and occasionally my husbands calls on my behalf
There is such a thing as video relay calls where Deaf people can use ASL + interpreter over video to call hearing people. I've never used this service so I won't try to explain it more in depth. There's also video-video communication between Deaf and/or ASL-fluent hearing people without the need for any interpreters or operators. E.g. Webcam, Facetime, Skype, etc. There are other ways for other Deaf people to make phone calls (The classic TTY/TTD is another example) but I don't use them.
I'd much rather stick to communicating with friends through e-mails or text messages which is easy to do since everyone is "addicted" to technology now, but sometimes I need to call businesses.Friday, February 15, 2013
Technology timeline: The Internet and socialization
I love how our culture took a steep dive into technology addiction during the 90s and particularly around 2000. This is a long, rambly entry and the only purpose is my nostalgia.
For all those who complain about how "addicted" everyone is to their phones, internet, computers--and how these addictions are crippling peoples' ability to socialize: you're only half right. Some people may no longer try to have friendly conversation with strangers while waiting for (class/bus/work/checkout lane/etc), because their nose is buried in their phone, but the rest of us never would've held a random conversation with people in the first place. So the technology is almost irrelevant, but there has definitely been a cultural shift.
My generation was the first to get computers in the schools (since my school had the budget for them). If you remember using the giant Apple computers and played Oregon Trail at school, then you were probably in elementary or jr. high in the early 90s. For me it was elementary school, and the moment I sat in front of a computer, I adapted immediately, it felt natural to type and I loved it. In elementary school, I could type 50wpm almost right off the bat. Once I learned how to type without looking at the keys, my speed increased. But that was just some kids playing Oregon trail, some math games, typing tests. We didn't have internet, but why would we? This was the early 90s.
I had minimum access to the internet back in 1995ish. I was 11 years old but I managed to get onto a chat room system a few times. (It might have been called IRC through IRQ or netscape internet). I loved it. To no real surprise, most of the people in the chat rooms were not my age. Back then, a couple of people refused to talk to me in private messages because I told them my age. I didn't have intentions of telling anything about where I lived, I just wanted to talk to people. I participated in chat room conversations where multiple people typed and I stopped sharing my age, because I could type quickly and maturely, no one knew any differently. I wasn't able to maintain internet access, but I got my first taste of communication through text. AKA: zero communication barriers for me.
In 1999, AOL came out with their new unlimited monthly internet access instead of their old style of limited minutes + outrageous overcharges. I loved it. Chat rooms, message boards, private conversations. It was perfect for me. All this access to conversations and I wouldn't be confused. It was my choice if I didn't want to know what was going on in a certain message board thread. The chat rooms were my favorite because you could talk to multiple people at the same time--to me it felt like it was making up for all the offline group conversations I could never truly participate in.
I vaguely remember having a beeper for a short period of time in case my parents needed me to find someone to call them, but that didn't last long enough to really build any solid memories. When I was 17, my parents got me a cellphone, but I couldn't really use it. It was just something I had on me in case of emergencies. I would be able to speak for myself and share my situation during emergency calls, but that was its only purpose. I was and am still unable to use the phone for small chat with friends.
But then text message slowly entered the world. First it was 100 texts per month, but not everyone had the capability to text. When everyone could send/receive text, they'd be charged if they didn't have a texting plan. Then came the 300 texts. Then 500 texts/month plans. Eventually, AIM was offered on phones, so I was able to talk to my friends who didn't have texting plans. Finally, unlimited texting was offered through T-mobile so I instantly switched (and I stayed with them up until my Sidekick 3 broke). Other companies started to add unlimited plans and this allowed more communication access. Today, enough people use texts that it cuts into the profit, so the phone companies are trying to eliminate the unlimited plans.
Nowadays it's really not uncommon or unusual for people to talk about conversations they had online, to read the news online, to watch TV online, to meet people they talked to through websites (dating or otherwise), to make plans with their friends through text, e-mails, Facebook posts. To all those who complain about how people can't seem to make a simple 5-minute phone call anymore and instead choose to text or e-mail people, I say: WOOHOO!!!!!
I love you, internet.
For all those who complain about how "addicted" everyone is to their phones, internet, computers--and how these addictions are crippling peoples' ability to socialize: you're only half right. Some people may no longer try to have friendly conversation with strangers while waiting for (class/bus/work/checkout lane/etc), because their nose is buried in their phone, but the rest of us never would've held a random conversation with people in the first place. So the technology is almost irrelevant, but there has definitely been a cultural shift.
My generation was the first to get computers in the schools (since my school had the budget for them). If you remember using the giant Apple computers and played Oregon Trail at school, then you were probably in elementary or jr. high in the early 90s. For me it was elementary school, and the moment I sat in front of a computer, I adapted immediately, it felt natural to type and I loved it. In elementary school, I could type 50wpm almost right off the bat. Once I learned how to type without looking at the keys, my speed increased. But that was just some kids playing Oregon trail, some math games, typing tests. We didn't have internet, but why would we? This was the early 90s.
I had minimum access to the internet back in 1995ish. I was 11 years old but I managed to get onto a chat room system a few times. (It might have been called IRC through IRQ or netscape internet). I loved it. To no real surprise, most of the people in the chat rooms were not my age. Back then, a couple of people refused to talk to me in private messages because I told them my age. I didn't have intentions of telling anything about where I lived, I just wanted to talk to people. I participated in chat room conversations where multiple people typed and I stopped sharing my age, because I could type quickly and maturely, no one knew any differently. I wasn't able to maintain internet access, but I got my first taste of communication through text. AKA: zero communication barriers for me.
In 1999, AOL came out with their new unlimited monthly internet access instead of their old style of limited minutes + outrageous overcharges. I loved it. Chat rooms, message boards, private conversations. It was perfect for me. All this access to conversations and I wouldn't be confused. It was my choice if I didn't want to know what was going on in a certain message board thread. The chat rooms were my favorite because you could talk to multiple people at the same time--to me it felt like it was making up for all the offline group conversations I could never truly participate in.
I vaguely remember having a beeper for a short period of time in case my parents needed me to find someone to call them, but that didn't last long enough to really build any solid memories. When I was 17, my parents got me a cellphone, but I couldn't really use it. It was just something I had on me in case of emergencies. I would be able to speak for myself and share my situation during emergency calls, but that was its only purpose. I was and am still unable to use the phone for small chat with friends.
But then text message slowly entered the world. First it was 100 texts per month, but not everyone had the capability to text. When everyone could send/receive text, they'd be charged if they didn't have a texting plan. Then came the 300 texts. Then 500 texts/month plans. Eventually, AIM was offered on phones, so I was able to talk to my friends who didn't have texting plans. Finally, unlimited texting was offered through T-mobile so I instantly switched (and I stayed with them up until my Sidekick 3 broke). Other companies started to add unlimited plans and this allowed more communication access. Today, enough people use texts that it cuts into the profit, so the phone companies are trying to eliminate the unlimited plans.
Nowadays it's really not uncommon or unusual for people to talk about conversations they had online, to read the news online, to watch TV online, to meet people they talked to through websites (dating or otherwise), to make plans with their friends through text, e-mails, Facebook posts. To all those who complain about how people can't seem to make a simple 5-minute phone call anymore and instead choose to text or e-mail people, I say: WOOHOO!!!!!
I love you, internet.
Saturday, February 9, 2013
Why I got the Cochlear Implant surgery. Part II
Warning: Parents with implanted deaf/HOH children may not be particularly fond of this entry.
---
I was 22.5 years old when I received the CI surgery. I was raised with hearing aids, I've always read lips, I used oral language to speak to others, and I was looking to improve communication skills. I was for every intents and purpose the perfect candidate for the surgery, so there weren't any roadblocks in getting the surgery approved. As a result, the time frame from talking to audiologist, surgeon, getting vaccinations and then the surgery itself was approximately a 6-month process. My parents' insurance was going to end when I turned 23, so I decided to go ahead and get the surgery while I'd be covered. This is not a particularly fascinating story for the "why" but the simplest reason--I didn't have a reason not to get the surgery. I only figured it'd be interesting to see what happened. If things improved--GREAT. If they didn't, no harm done.
But don't mistake my feelings about how easy it was for me to decide to get the CI to mean I'd encourage every deaf or HOH
person to get implanted. For adults--they can do anything they want. For children it becomes a complicated issue. In the end, they're not my children, my opinions don't affect what anybody else chooses to do and that's fine. But here's what I think:
I think the CI can be an excuse for hearing parents to avoid raising their children in a bilingual Signing+oral language home. The CI takes work, a LOT of work for the person wearing it, and there are a lot of annoyances about it (it's ugly,it constantly falls off, it gets in the way of doing normal activities, etc.,) and even after a lot of effort and time, the CI may not work the way most people believe it does. You don't simply switch the "on" switch and get the results of normal hearing person.
The parents don't have to do any work in comparison. Choosing to give a child a Cochlear Implant and not raising them in a bilingual home with sign language is the easiest decision they can make for their deaf/HOH child, because it stops being the parents' problem. All they have to do is drive the child to the appointments. The kid will have to do all the work in adjusting to the CI.
Am I simplifying things? Absolutely. The parents have their own struggles, and they're only trying to do what they think is best for their kids, they don't intend to do any harm to their child, but I cannot relate to them or their frustrations or why they don't comprehend their children's frustration with the device. I wouldn't be able to fully relate to their children either because I wasn't implanted as a child, it was something I chose to do as an adult. But most importantly, the parents' struggles would not be the same as their own children, and I think some of them forget that when they talk about how much the CI has helped their kids, or the other side of the coin when they're confused about when their children seem to be upset for no reason. There's definitely a reason, and it's not because the child is tired or hungry. The parents might be helping their children in one way, but have they considered they might be holding them back in other ways? What happens if the CI stops working or when the person isn't wearing it? What's the backup plan?
This blog is about me, though. My motivations for getting the surgery will not match up with other peoples' reasons, and that's perfectly OK. I'm not out to persuade anybody, but if I'm ever asked what I think about parents who get the surgery for their children then it's this: I think it's perfectly acceptable if they raise their children with ASL and English*. They may believe they're doing what's best for their child but if they only teach their child an oral language then they're looking at it from their own hearing perspective rather than a deaf perspective.
* replace ASL, English with the appropriate languages based on where ever deaf children with implants are located. There are many sign languages out there, but ASL is what's used in the US and English is the native language for my family.
Definitions
Here's a list of words or acronyms and their explanations. I'll continue to add to this list and will usually link back to this when used in future entries.
ADA: American with Disabilities Act.
CART/Stenographer: For school, I use a stenographer to caption my lectures in real-time. They type on a machine, I read the captions on a laptop. If you've ever been inside a courtroom in session, you may have noticed the stenographer sitting off and typing everything being said. It's equipment that allows the person to type over 200wpm. 200!! And I thought my 100+ wpm was pretty darn fast.
CV: Caption View. Captioning device used at Cinemark theaters (Possibly other theater chains as well, but in Kansas City, I have only seen Cinemark use this awesome captioning device).
CI: Cochlear Implant.
Equal Access: This is a broad term to fulfill ADA requirements. There isn't any one specific situation or accommodation that allows everyone equal access, particularly in educational settings. Most people are familiar with wheelchair accessibility, but it doesn't end there. In the educational setting, it may be preferential seating, note takers, captioned movies, ASL interpreters, etc. This is to help close barriers.
Hearing Impaired: Offensive term coined by hearing people. Don't use it. (Unless a deaf/HOH individual tells you that's their preference) Here's an explanation
HOH: Hard-of-Hearing
1Fuzion: An app designed to be incorporated with my CART technology. What the CART types will also appear on the big powerpoint screen shown in my classroom. This allows me to follow along with the captioning while professors are pointing to images, rather than reading the captioning and looking up--only to miss the image entirely. See example of 1Fuzion here.
Mainstream: This is for education. Mainstreaming can be a combination of special education and general classes. I was put into hearing public schools and only had classes with hearing students.
MAPPing: Programming a CI to the user's specifications. I think of it as the auditory version of getting eyeglasses prescription. They keep asking you which looks (sounds) better: First, second, or third? Sometimes it's hard to tell a difference, but other times it's obvious which is the best choice.
Processor: The external pieces to my CI. The actual Cochlear Implant is obviously internal, but occasionally I'll say "CI" even though I'm talking about the external equipment.
Relay Phone Calls: There are relay phone services out there for those who do not wish to use TTY/TTD. I've previously used voice carry-over relay where I'd use my own voice to speak, and the operator would type the response.
Nowadays, the one I use is internet relay (there is also video relay. Since I have never used it, I won't be explaining how it works):
Internet relay: I type, operator speaks to "Bob", operator types Bob's response for me to read. See a sample conversation on this entry:
RW: Rear-Window. This is a captioning device offered at select movie theaters. I personally think it's a horrible device, but when it first came out it was better than waiting for movies to be released for renting.
SmileNod: This is my Frankenterm to describe my actions when I pretend I understand what people are saying. I do not literally mean I only smile and nod when people talk (but sometimes that happens), it is a collection of various behaviors where I attempt to fool people into believing I'm at the same pace of the conversation. It gets irritating for me to constantly ask people to repeat, so I let them keep talking while I try to piece together all the words and figure out their overall point to what they're saying to me. What are those specific behaviors? I don't intend to give away all my secrets! :)
Sony CC Glasses: New Closed Captioning glasses offered by Sony. Captions only show up on the screen by those wearing the glasses. So far I've only seen this at Regal Kansas City Cinemas.
Heard or Understand : This is my own personal twist on the definitions. When I say I didn't hear or understand someone, I mean I unsuccessfully read their lips, therefore they might as well be speaking French. I heard the sounds, but it all sounded like noise. Not being able to understand someone has nothing to do with my intelligence.
ADA: American with Disabilities Act.
CART/Stenographer: For school, I use a stenographer to caption my lectures in real-time. They type on a machine, I read the captions on a laptop. If you've ever been inside a courtroom in session, you may have noticed the stenographer sitting off and typing everything being said. It's equipment that allows the person to type over 200wpm. 200!! And I thought my 100+ wpm was pretty darn fast.
CV: Caption View. Captioning device used at Cinemark theaters (Possibly other theater chains as well, but in Kansas City, I have only seen Cinemark use this awesome captioning device).
CI: Cochlear Implant.
Equal Access: This is a broad term to fulfill ADA requirements. There isn't any one specific situation or accommodation that allows everyone equal access, particularly in educational settings. Most people are familiar with wheelchair accessibility, but it doesn't end there. In the educational setting, it may be preferential seating, note takers, captioned movies, ASL interpreters, etc. This is to help close barriers.
Hearing Impaired: Offensive term coined by hearing people. Don't use it. (Unless a deaf/HOH individual tells you that's their preference) Here's an explanation
HOH: Hard-of-Hearing
1Fuzion: An app designed to be incorporated with my CART technology. What the CART types will also appear on the big powerpoint screen shown in my classroom. This allows me to follow along with the captioning while professors are pointing to images, rather than reading the captioning and looking up--only to miss the image entirely. See example of 1Fuzion here.
Mainstream: This is for education. Mainstreaming can be a combination of special education and general classes. I was put into hearing public schools and only had classes with hearing students.
MAPPing: Programming a CI to the user's specifications. I think of it as the auditory version of getting eyeglasses prescription. They keep asking you which looks (sounds) better: First, second, or third? Sometimes it's hard to tell a difference, but other times it's obvious which is the best choice.
Processor: The external pieces to my CI. The actual Cochlear Implant is obviously internal, but occasionally I'll say "CI" even though I'm talking about the external equipment.
Relay Phone Calls: There are relay phone services out there for those who do not wish to use TTY/TTD. I've previously used voice carry-over relay where I'd use my own voice to speak, and the operator would type the response.
Nowadays, the one I use is internet relay (there is also video relay. Since I have never used it, I won't be explaining how it works):
Internet relay: I type, operator speaks to "Bob", operator types Bob's response for me to read. See a sample conversation on this entry:
RW: Rear-Window. This is a captioning device offered at select movie theaters. I personally think it's a horrible device, but when it first came out it was better than waiting for movies to be released for renting.
SmileNod: This is my Frankenterm to describe my actions when I pretend I understand what people are saying. I do not literally mean I only smile and nod when people talk (but sometimes that happens), it is a collection of various behaviors where I attempt to fool people into believing I'm at the same pace of the conversation. It gets irritating for me to constantly ask people to repeat, so I let them keep talking while I try to piece together all the words and figure out their overall point to what they're saying to me. What are those specific behaviors? I don't intend to give away all my secrets! :)
Sony CC Glasses: New Closed Captioning glasses offered by Sony. Captions only show up on the screen by those wearing the glasses. So far I've only seen this at Regal Kansas City Cinemas.
Heard or Understand : This is my own personal twist on the definitions. When I say I didn't hear or understand someone, I mean I unsuccessfully read their lips, therefore they might as well be speaking French. I heard the sounds, but it all sounded like noise. Not being able to understand someone has nothing to do with my intelligence.
Q&A: Music
"Obviously, you listen to music.. how clearly do you hear it? Is it different because of how close the source is (headphones)? "
Phew. This doesn't have a simple answer.
I can compare hearing aids Vs Cochlear Implant, and even then, I haven't given the CI a fair shot for listening to music. I still need to re-train my brain for music. The first few times I've tried listening to music with the CI directly hooked into an ipod, all my favorite songs were unrecognizable and irritating noises. That could simply mean I have terrible taste in music!
What I ended up doing was I'd listen to music at work before the store would open to the public. After a few months passed, I was better able to recognize my favorite songs once again. I could detect more of the musical sounds, but they weren't the memories I formed of my music collection. The songs were tolerable, but not preferred.
Some more time passed and I stopped hooking up the music directly and went back to earbuds. I liked the earbuds because it felt like I had three ears. I could simultaneously listen to music and talk to someone. I believe one reason why it's not as enjoyable to directly connect to my CI is because I'm not able to tune out the rest of the world. (But I can separate the sounds with earbuds + wearing CI at same time because the sounds are coming from two entirely different pathways to my brain). You can get MAPPed for listening to music, but I've only gone to a couple of MAPPing appointments. It's on my to-do list now that I have health insurance again.
What I can definitely compare is I was able to catch more of the higher pitch music that was previously drowned by the other sounds in the songs, or by the environment I was in. For example, in restaurants, I was previously unable to detect the music. The restaurants were loud and I was unable to separate people talking from the music. I loathed going to restaurants and wearing a hearing aid. I'd end up with a headache from the noise. Nowadays, I can usually detect there is music playing in restaurants, but I'm still unable to tell you what the song is, or even what type of music. This doesn't mean I enjoy the music in stores or restaurants, but they are more tolerable than it used to be because I can recognize it isn't static-like noise.
Your question reminded me that not only do I need to try re-training my brain to listen to spoken words, but also to directly hooking up my music to my CI. Back then I found my music irritating, but now I'm seeing it as a more fascinating process to compare differences. In particular I'll need to compare classical music. With earbuds, I hate classical music. It's just screeching noise, but perhaps it'll be soothing when directly hooked to my CI? I'll have to test that out soon.
Because the surgery didn't eliminate my residual hearing, I can still listen to my music using specific earbud styles and positioning in my ears. Apple's classic earbuds work fantastic for me. Their new style in comparison is useless. Recently, I tried experimenting by listening to music while wearing my CI using the different headphones at the Apple store. Although I was able to hear the music, they were too muffled for me to considering switching to headphones. If I'm going to listen to music, I want it to be "loud" (loud to everyone else, but medium level for me).
I can listen to a CD while driving a vehicle, but the volume is roughly the same as hearing aids--Why is this? It's because I haven't learned how to tune out other noises. When I drive, all I can hear are the traffic noises, so the music needs to be loud enough to overcome that noise barrier. If I could tune out other sounds, then I'd say the CI has a better amplification and processing system. A hearing aid is only an amplification system. I highly prefer listening to music with my earbuds, not the car's stereo system! I'm sure the other drivers on the road would prefer it as well.
The pictures attached shows how I must position earbuds in order to maximize sound going into my ear, and how the CI directly connects to an Ipod.
CI and Hearing Aid pictures
If you believe they look roughly same size, then let's take a look at their comparison when worn.
It's a pretty significant jump in size when you don't have large ears! My CI is constantly falling off and I've yet to find an aesthetically pleasing solution. I've tried the CI snug-fit accessory and hated it. I've tried using an earmold (worked decently, but then I can't wear my earbuds for listening to music), and I've tried cheap headbands but they either weren't wide enough to hold the CI in place, or they'd twist the processor into an uncomfortable position. My next attempt will be using a wider, knitted headband, but that may block the microphone.
Post-CI surgery journal entry from 2007
Journal entry from Feb. 2nd, 2007
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The doc told me it'd be a couple of months before my ear returns to its normal size.
Asymmetry of my eyebrows and my ex-monroe piercing never bothered me. My ears? Train wreck. hate it. Want to tape my ear to my head. My right ear protruded prior to the surgery, but the dumbo style has been excerbated since bending my ear towards my face for hours while they played inside my head.
Tomorrow is my second appointment for my CI. I've only been able to hear a few sounds. Perhaps she'll program traffic noises tomorrow. My first few days I could barely hear the voices on the tellie at volume 53 but is now at volume 40 like it was when i wore hearing aids.
Something cool: I can listen to my music and wear my CI at the same time. I can read lips without sounds, but it's like I have three ears now. It's fascinating even though I realize that hearing people can do the same thing.
My CI is NOT "OMG WOW YAY AMAZING THANK YOU!"
How useful would sound be to you if everyone spoke a foreign language? It's just background noise until I read lips. So as far as I'm concerned, the CI as of right now is no different than a hearing aid. But maybe that will change the more I use it.
The only new sounds i've picked up is increased sensitivity to my turn signal, clocks ticking, and my slippers. I finally understand why people yelled at me for dragging my feet across the room.
I heard these sounds with my hearing aid, but the clock wasn't overbearing. I would like to replace every clock, but that would be too expensive.
Goal: Realistically, I'll always read lips, and that's fine. But if I can train my brain to interpret words, it would make group situations easier. I shy away from group situations and I'm quiet around new people because I can't read their lips yet.
I don't want to avoid group situations forever.
I don't want to give off, "stay away from me" vibes forever.
But I've long ago stopped trying to fool myself into thinking I'm NOT annoying when every 2 minutes I say:
what did you say?
repeat that?
what's the topic now?
what's so funny?
what's going on?
uh...write that down? come on, please!
I don't want to pretend. I stopped doing that a long time ago. I got tired of putting in so much effort without good times to show for it. I felt alone in groups of people. BMEFEST Mexico is the only exception. It taught me that it's possible for me to enjoy group situations under the right circumstances. I am not meant to be a wall. Being unable to understand what people said makes it nearly impossible to show the world who I am. At some point I'll figure out how to do this, but perhaps my CI will help me in that journey.
Post-CI surgery: Turning the implant on
Journal entry from Jan. 18th, 2007
My first impressions of turning the CI on:
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My CI was turned on yesterday and boy do I regret not asking for a bodyworn processor. I knew it'd be big, but not this gigantic. Pictures to be updated later. Unfortuntely, I asked for both processors to be BTE. So I'm stuck with looking like Dumbo.
Right now, I can hear voices if I struggle and the TV accessory doesn't fit my tellie so my Dad will buy an adapter. I can also hear my blinker and other high pitches (water--but it sounds like a steady beep) but I cannot hear traffic noises, my horn, other loud noises**. Right now, trying to hear voices is overwhelming so I'm hardly complaining.
I can still listen to music with my earbuds, just not with the CI directly plugged into my ipod because it just sounds like ringing. I didn't lose my hearing, so that's good, if I never adjust to this awful thing, I can do away with it (I won't give up after one day).
I sure hope I adjust because I'm tempted to throw it against the wall. It's AWFUL.
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** Meaning I could not distinguish between the different sounds.
2013 update/impressions of turning the CI on
I believe the Youtube videos of deaf people hearing sound for the first time with their CIs are exaggerations. I don't doubt the patients heard sounds, but I'm not convinced hearing people are putting much thought into the videos. What are hearing people imagine the sounds to be like? Probably the way their own hearing currently functions: flawless, understandable, distinguishable sounds.
I could only hear high-pitch squealing noises for an entire month and I grew up with hearing aids and thus my brain was familiar with sounds, albeit a different pathway. That's why I had problems hearing people speak to me during my first month. The voices of my family members were competing against loud environmental noises going on. It took multiple MAPPing appointments and time to adjust to the processor. I could hear, but the problem was I heard too much that it all canceled each other out and become a giant clump of noise pounding my head. Sound isn't enjoyable when it's noise.
Post CI-surgery: Healing & residual hearing surprise
Journal entry from Dec. 25th, 2006:
Note: After the surgery you need to heal. After a month, your processor/device is turned on. This is during the surgery healing stage.
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Is additional pain worth decreasing the pain of the IV? My last surgery, they gave me pills, but this time they stuck a needle between the skin of the IV because I said it hurt. Thanks! What is it about hospitals that strikes fear and turns me into a beast? My father and boyfriend weren't allowed in the prep area so I had to try my best in reading strangers' lips . The normal questions were easy to predict, but there were a few things I had to stare at them blankly about.
I was in the hospital from 6am until 1pm. I woke up around 10:30am, but I'm not sure how long the actual surgery took. I was told it was 3 hours long, but unless I woke up 5 minutes after surgery, they finished up earlier than expected. It was boring to wait 2 1/2 hours but I wasn't about to complain when mike and dad had been waiting 7 hours total. They prescribed vicodin but no antibiotics (said I didn't need any).
I arrived home around 4pm and felt fine aside from weakness and a swimmer's ear sensation. I was glued to the couch watching all the Judge shows and playing my DS lite for 6 days--WHY? Because a couple of days after the surgery, I caught the cold everyone else in the family already had. My head would throb more with every cough, sneeze, or blowing of the nose. I should be healed up from the cold in the next couple of days. My tonsillectomy was 100xs more painful, so healing from the implant is a breeze in comparison.
One week after surgery: For the fun of it, i wanted to test out my hearing of the implanted ear. I listened to my ipod for about 30 seconds and was shocked to learn I can still hear out of it**. The sound is lower, but workable with earbuds. I hope remaining hearing doesn't mean they messed it up, but all this time I thought the rest of my hearing would be destroyed and I could never listen to music with an earbud (without the processor) and never wear a hearing aid again. So what gives?
One month: On January 17th, I'll receive the processor and my first MAPPing. It's supposed to be a 3-hour long appointment with three additional appointments at 2 hours each. oh boy, that sounds like fun...
** The general rule was: once you receive the CI implant, your residual hearing is completely destroyed. This was not the case for me and is no longer a common occurrence today as it was 25 years ago.
Note: After the surgery you need to heal. After a month, your processor/device is turned on. This is during the surgery healing stage.
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Is additional pain worth decreasing the pain of the IV? My last surgery, they gave me pills, but this time they stuck a needle between the skin of the IV because I said it hurt. Thanks! What is it about hospitals that strikes fear and turns me into a beast? My father and boyfriend weren't allowed in the prep area so I had to try my best in reading strangers' lips . The normal questions were easy to predict, but there were a few things I had to stare at them blankly about.
I was in the hospital from 6am until 1pm. I woke up around 10:30am, but I'm not sure how long the actual surgery took. I was told it was 3 hours long, but unless I woke up 5 minutes after surgery, they finished up earlier than expected. It was boring to wait 2 1/2 hours but I wasn't about to complain when mike and dad had been waiting 7 hours total. They prescribed vicodin but no antibiotics (said I didn't need any).
I arrived home around 4pm and felt fine aside from weakness and a swimmer's ear sensation. I was glued to the couch watching all the Judge shows and playing my DS lite for 6 days--WHY? Because a couple of days after the surgery, I caught the cold everyone else in the family already had. My head would throb more with every cough, sneeze, or blowing of the nose. I should be healed up from the cold in the next couple of days. My tonsillectomy was 100xs more painful, so healing from the implant is a breeze in comparison.
One week after surgery: For the fun of it, i wanted to test out my hearing of the implanted ear. I listened to my ipod for about 30 seconds and was shocked to learn I can still hear out of it**. The sound is lower, but workable with earbuds. I hope remaining hearing doesn't mean they messed it up, but all this time I thought the rest of my hearing would be destroyed and I could never listen to music with an earbud (without the processor) and never wear a hearing aid again. So what gives?
One month: On January 17th, I'll receive the processor and my first MAPPing. It's supposed to be a 3-hour long appointment with three additional appointments at 2 hours each. oh boy, that sounds like fun...
** The general rule was: once you receive the CI implant, your residual hearing is completely destroyed. This was not the case for me and is no longer a common occurrence today as it was 25 years ago.
Follow-up on changes post-CI surgery
This won't cover all the changes since the CI surgery, but it will address the specific Pre-surgery concerns/comments from the previous post.
I'm still left out of conversations because I still require reading lips to understand anything that's going on. If it's more than one person, I will inevitably get lost and be unable to understand the entire conversation, yet alone contribute without asking for repeats. Smilenod.
I no longer have to wait for movies to come out on DVD, but that has nothing to do with my CI. This is thanks to a fantastic technology advancement that Cinemark theaters offer. Gone is the atrocity (but was appreciated in its early days) called rear-window (RW) that offered extremely limited show times and date (generally a movie for children). Now there's a wireless captioning device (CaptionView or CV) that has allowed access to at least half of their movies at ANY show time. There is still a time limit of approximately 1-2 weeks to see the movie, but while the captions are offered, I can attend any showtime and that's a significant jump from RW. I'm finally experiencing what it's like to go out to movie theaters and enjoy them.
Years ago I had multiple friends ask: "Why don't theaters make it so captions only show up when you wear special glasses?"
The future is now. Regal Kansas City Cinemas offers this technology. I've yet to try this out, but I plan to check out this theater during my March Spring Break.
I'm still unable to make phone calls using the standard telephone, and I don't ever expect this to change. Honestly, even if this ever changed, I don't know how to hold telephone conversations the way I can hold conversations over Instant Messaging or texts. It would be nice to call businesses without being hung up on or being told by employees they will not talk to me because it's a relay call (which is illegal and is discrimination, but that doesn't stop them).
I still cannot interpret sounds when I first hear them, but I have gotten better at recognizing the sounds after the first time someone informs me what it is. This is roughly the same as my hearing aid days, but the sounds are clearer and more recognizable. Whether that's good or bad depends if you're talking about a ticking clock, Cicadas, or the sounds of furry animals.
Ps. furry animals make adorable noises. Even barking dogs sounds pleasant to me. What isn't pleasant? Radio show voices. They might as well be fingernails on the chalkboard.
The decision to get a CI
Below is a journal entry from pre-CI surgery
From June 5th, 2005:
I once said I'd never get a Cochlear Implant.
"Never say Never" might be a piece of advice I should've followed.
I am tired of being accidentally left out of conversations, tired of people talking about me when I'm right there (good or bad is irrelevant, the fact that they're talking about me and not telling me is rude) tired of how hard it is to make friends, tired of being unable to properly make plans to hang out with new people, tired of waiting for movies to come out on dvd, tired of how long it takes to learn how to read the lips of new people, tired of being socially shy because I know how hard it is to communicate with me, tired of pretending to know what people are saying, and certainly tired of people thinking of me as a rude/snobby.
I would love to finally be able to engage in a group discussion, make phone calls and both understand and hear the noise coming from the other end, go on a dinner-and-a-movie date, occasionally being social, being in less awkward situations when it comes to new people talking to me.
I don't even know if it'd work OR how long it would take for me to learn how to interpret sounds so that I wouldn't have to read lips. I'm not even sure what would be crossed off the list of things I could do (can I deep sea dive, can I safely play soccer, can I go sky diving, can I be on a plane longer than 5 hours?)
My parents would be so thrilled to learn that I'm seriously considering a cochlear implant.
So why does the idea seem exciting but saddening? My parents have spent years trying to turn me into a hearing person. They don't always get my attention when they talk to me,they just start talking and I have to prod them to look at me and repeat, so they never seem to remember I must read lips or I don't know what they're saying.
I used to go two years with hearing aids. Two years without, so that I wouldn't be so overly dependent on hearing aids. I can hear sounds, but I cannot interpret them with a hearing aid, I MUST read lips. SO WHY DO I WEAR ONE??? It caters to everyone elses laziness so that they won't have to catch my attention (because yelling is so much fun...)
I'd like to think I'd still have the same level of English skills even if they had placed me into a Deaf school, allowed me to learn ASL, and allowed me to develop social skills in an environment where I would understand everything going on. But I don't know, maybe if they hadn't mainstreamed, I'd have "4th grade English skills." But because I didn't understand what was going on around me, I turned to books. I was insomniac and I read books everynight. Would I have done so well in school, or read so many books if I hadn't been so isolated growing up?
Two reasons why they didn't teach me ASL: "We didn't want you to be handicapped " But I am handicapped and one reason is because I wasn't taught ASL. The other is because it's a hearing world, and even if I grew up with ASL, I'd still be just as held back from communicating with hearing people as I am now. A lack of communication in real life is a handicap. A guessing game is not stable or accurate and therefore not a true sense of communication.
In July, I'll be making an appointment to discuss a cochlear implant. Every hearing test I've had, they'd say I'd be a perfect candidate and that I should consider it. But does perfect include being able to understand sounds?
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Coming up next: What has changed since this journal entry from 2005 and are which changes are credited to getting a CI?
Thursday, February 7, 2013
SmileNod predicaments.
A SmileNod predicament.
In 7th grade, I was waiting outside to be picked up from the school dance. A classmate walked up to me and started talking. I couldn't understand most of what he said so I just did the SmileNod behavior with the occasional, "I don't know..." as I looked down at my feet. He misinterpreted this as being shy. I thought nothing more of this encounter that evening.
The next day, he came up to me and sat down at lunch, started talking and later gave me a hug goodbye. I quickly figured out exactly what had happened after the school dance: I said YES to a question I didn't know he asked: "Would you like to go out with me?" In middle school language, that means boyfriend-girlfriend. At lunch, my best friend at the time shot me a glare and said, "You didn't tell me you had a boyfriend!" Well, I found out at the same time she did.
It wasn't uncommon to send friends-of-friends to verify if someone liked you. At 12, you're still learning how to interact and handle your attractions to people. This classmate had enough courage to do it on his own--only to mistakenly get answers to questions I didn't know were being asked. It worked out fine, I never told him of the mistake and he later ended up being my first kiss during the middle of band class while everyone surrounded us.
Although I don't usually notice when I'm pretending to understand what people are saying, sometimes the SmileNod gets me into awkward situations. I can look back and laugh about it, but it sure was an odd situation at the time.
In 7th grade, I was waiting outside to be picked up from the school dance. A classmate walked up to me and started talking. I couldn't understand most of what he said so I just did the SmileNod behavior with the occasional, "I don't know..." as I looked down at my feet. He misinterpreted this as being shy. I thought nothing more of this encounter that evening.
The next day, he came up to me and sat down at lunch, started talking and later gave me a hug goodbye. I quickly figured out exactly what had happened after the school dance: I said YES to a question I didn't know he asked: "Would you like to go out with me?" In middle school language, that means boyfriend-girlfriend. At lunch, my best friend at the time shot me a glare and said, "You didn't tell me you had a boyfriend!" Well, I found out at the same time she did.
It wasn't uncommon to send friends-of-friends to verify if someone liked you. At 12, you're still learning how to interact and handle your attractions to people. This classmate had enough courage to do it on his own--only to mistakenly get answers to questions I didn't know were being asked. It worked out fine, I never told him of the mistake and he later ended up being my first kiss during the middle of band class while everyone surrounded us.
Although I don't usually notice when I'm pretending to understand what people are saying, sometimes the SmileNod gets me into awkward situations. I can look back and laugh about it, but it sure was an odd situation at the time.
Why sounds matter
I previously alluded to sound being irrelevant to understanding what people say. That's not an fair picture. It matters, but it is not functional by itself. A few years ago, I discovered how much reading lips doesn't always work by itself either.
I went out of town to visit some friends in Omaha, Nebraska for NYE. My rechargeable CI battery unexpectedly died and I ran out of disposables before I ordered more. CI batteries are pricey.* The last of my disposables died within hours of showing up to Michelle's house. I was around people I've spent a decent amount of time around and I thought I knew how to read their lips. I suddenly went from understanding most of what they said, to almost nothing. Because they were friends, they were willing to work with me and try to help me understand, but the experience provided an insight for how much the CI has helped compared to hearing aids.
This by no means concludes I view the CI as a magical fix or cure. You don't pick up a musical instrument and immediately know how to play, it takes practice. A hearing aid or CI is similar. Some people will never be able to play the trumpet, and not everyone can play decent music no matter how much time and effort they give. (Related to that subject, I grew up playing musical instruments).
Over time, my brain has slowly and subconsciously been practicing with understanding sounds. Which was further proven when I went in for my second ever MAPPing two years ago. I learned if i focus intensely, I could understand neutral accents by sound alone. The problem is I don't have any brain power left to remember what was said. If my new health insurance covers CI-related visits, then it's possible if I go through official hearing therapy and get MAPPed more often, I may be able to actively re-program my brain to understand and memorize what people say. For now, it's passive learning. I don't ever expect to pass for a hearing person, and I don't intend to. I plan on primarily communicating in ASL in the future. But it'd be nice to be more functional in a group of hearing people when there's no other option.
*Rechargeables are $200 for one year and disposables are $5/week+ shipping, and there are other parts to the processor that can and have broken in the past to the tune of $100-800. It's not pocket money to maintain the equipment. If I wanted to upgrade the processor, I was quoted roughly $8,000.
I went out of town to visit some friends in Omaha, Nebraska for NYE. My rechargeable CI battery unexpectedly died and I ran out of disposables before I ordered more. CI batteries are pricey.* The last of my disposables died within hours of showing up to Michelle's house. I was around people I've spent a decent amount of time around and I thought I knew how to read their lips. I suddenly went from understanding most of what they said, to almost nothing. Because they were friends, they were willing to work with me and try to help me understand, but the experience provided an insight for how much the CI has helped compared to hearing aids.
This by no means concludes I view the CI as a magical fix or cure. You don't pick up a musical instrument and immediately know how to play, it takes practice. A hearing aid or CI is similar. Some people will never be able to play the trumpet, and not everyone can play decent music no matter how much time and effort they give. (Related to that subject, I grew up playing musical instruments).
Over time, my brain has slowly and subconsciously been practicing with understanding sounds. Which was further proven when I went in for my second ever MAPPing two years ago. I learned if i focus intensely, I could understand neutral accents by sound alone. The problem is I don't have any brain power left to remember what was said. If my new health insurance covers CI-related visits, then it's possible if I go through official hearing therapy and get MAPPed more often, I may be able to actively re-program my brain to understand and memorize what people say. For now, it's passive learning. I don't ever expect to pass for a hearing person, and I don't intend to. I plan on primarily communicating in ASL in the future. But it'd be nice to be more functional in a group of hearing people when there's no other option.
*Rechargeables are $200 for one year and disposables are $5/week+ shipping, and there are other parts to the processor that can and have broken in the past to the tune of $100-800. It's not pocket money to maintain the equipment. If I wanted to upgrade the processor, I was quoted roughly $8,000.
Talking to Strangers
What is it like for me to talk to random people? I can hear the noises of people talking, but I cannot understand. The best way I'm able to describe to people is by asking them if they can hear when people speak a foreign language. Their answer is, "yes, of course!" Then I ask if they understand. Their answer is "no."
"How much do you hear" or "how deaf are you?" is an irrelevant question to ask me. I'm used to those questions, they don't bother me, but they're complicated to answer because they're not the correct questions to ask me.
I hear a lot, but until I'm reading the lips of someone I'm speaking to, they might as well be speaking Russian. I cannot understand by sound alone, reading lips is a crucial skill for communicating with hearing people. If you throw in accents, that means their lips are moving in a different way. If you throw in mumbling, then their mouths hardly move. I can hear them just fine, but each word isn't enunciated so until they change how they speak, they might as well be speaking Russian.
This does not mean I cannot understand everyone who has an accent, it just means it's harder for me. With any new person I meet, I have an adjustment period where it's difficult to communicate. I sit back and I observe how they speak. Within time, I might be able to adjust to their style of talking and hold normal conversations.
Those first couple of times are horrible for me. Understandably, it's difficult to make new friends when the new person (me) doesn't talk, doesn't understand what's going on, and only seems to stare at people. Kinda creepy, eh? Thank goodness for the internet!
If I'm quiet around people, it's because I don't understand what's going on, but I'm trying to adjust so I can attempt in participation. It never works on the first time. I need to spend a lot of time around people several times where I stare at everyone before they can remotely begin to get to know me. I am also quiet in group situations because there's too much going on for me to stay at roughly the same pace. If there's more than 5 people, it's a nightmare for me, and I usually end up going home disappointed and feeling isolated.
Functioning around hearing people
On an individual basis, I'm able to hold a reasonable conversation with a hearing person where I use spoken English and read their lips -- providing they do not have an extreme accent, don't mumble, and they face me while they talk. The majority of the time, I'm barely functional about understanding new people but it's easier if we're talking about a predictable, everyday topic.
If they have an accent, absolutely not. Their accent is cause for anxiety and the increasing desire to leave the situation. Southern accents? Awful understanding. British accent? Pleasant to listen to, but they might as well be speaking gibberish. Indian accents? Forget about it! There's almost nothing more I hate than trying to talk to someone I cannot understand. It's embarrassing, it's frustrating, and it doesn't get anywhere productive. It's easier just to walk away. People tend to find it too awkward to write down what they're saying to a stranger, many have flat out refused and some shout out what they said. Why should they write anything down? It's not their problem if I can't understand them, but it becomes my problem in group situations at school.
The majority of GTAs in my Science classes at school have heavy accents. This means it's uncomfortable for me to ask questions one-on-one because the end result is common: I pretend I heard them and I walk away.
I have disability accommodations at my schools but the person providing the captioning cannot get up with their equipment and follow me around the room. I'm not fluent enough in ASL to use interpreters. That leaves me with trying to force the GTA to walk up to me, never the reverse. That's simply not realistic. I dread the labs I have for classes. They should be fun, but I loathe them.
Group situations in labs are even worse when you're partnered with more than one person. Without fail, the other two people always end up babbling to themselves about the experiments and I cease to exist. I can't follow along, it's difficult to provide input or my own thoughts because the captioning I'm reading on my laptop screen is seconds behind. Seconds are crucial in response time for contributing to group work. If I had to guess, I would say I'm viewed as the slacker who doesn't contribute. I try, but all that happens is interrupting their conversations and getting snide looks.
As common as my behavior is to SmileNod/pretend to understand when people are talking. It's so ingrained in me that I no longer notice when I don't understand until someone asks a question that doesn't have a yes/no/sure answer. The SmileNod behavior combined with a yes/no question is how I ended up with my first boyfriend, which I'll talk about in the near future.
Sunday, February 3, 2013
My story
Creating a blog about my Cochlear Implant (CI) experiences has been a neglected item on my To-Do list from the day I decided to be implanted. I will not make any claims of the CI drastically changing my life or changing me into a person who passes for hearing. I have found there is a little bit more clarity in sounds compared to hearing aids, and that I can understand some words my closest family say to me without reading their lips. I have also learned if I focus intensely, I can understand a few words a stranger is saying, but by the time they're done talking, I've used all my mental energy on trying to understand them that I can no longer remember what they've said.
I've created a new blogspot for my CI & deafness stories both to discuss my experiences as a deaf person, making the decision to be implanted, pre and post-surgery, adjusting to the device, and just sharing general deaf or CI-related stories.
This blog should potentially encourage me to re-train my brain by practicing with audio tapes. I am Pro-ASL, pro-bilingual (or multilingual) for families with deaf children, but I am not currently using ASL as a primary language. That is another change I'm hoping to make and will be highlighting my progress here as motivation.
I've created a new blogspot for my CI & deafness stories both to discuss my experiences as a deaf person, making the decision to be implanted, pre and post-surgery, adjusting to the device, and just sharing general deaf or CI-related stories.
This blog should potentially encourage me to re-train my brain by practicing with audio tapes. I am Pro-ASL, pro-bilingual (or multilingual) for families with deaf children, but I am not currently using ASL as a primary language. That is another change I'm hoping to make and will be highlighting my progress here as motivation.