YouTube video by National Deaf Children's Society based in the UK
Saturday, November 30, 2013
Sunday, October 13, 2013
8 weeks into nursing school.
As much as I'd love to say my school has been meeting my accommodations flawlessly, I am unable to say anything positive. I was hoping to update after the issues have been resolved so I could say, "This is what went wrong. Here's how my school fixed it. Therefore my school is awesome!" Unfortunately it hasn't been fixed, and I am not proud of my school at this time. I would like to be.
It has now been 8 weeks since nursing school started and there are still multiple issues, primarily with captioning the podcasts and videos. I've had to hunt down the materials, tell my access counselor what needs to be captioned, and hope it gets done before I have a quiz or lab skills test. Which means everyone else gets accessed to the materials on time and gets a week to review, but I scramble at the last minute. How is this equal access? Why is it too difficult for them to caption the materials, and then release the materials online for everyone to view at the same time?
As nice as my professors are, their niceness interferes with my expensive education. They do not understand the needs of deaf patients, yet alone deaf students. Their ignorance is not their fault--medical professionals are taught the most offensive methods for communicating with deaf people. The books we read tell us to encourage deaf patients to speak with their voices-- if they feel ashamed--even if the patients don't want to speak-- even if the medical professional finds them difficult to understand!
The books also encourage medical professionals to tell hearing parents to quickly get their "hearing impaired" children to audiologists and fitted with hearing aids so they're not developmentally delayed. The books say hearing loss can be corrected by cochlear implant, hearing aids, audiology and speech therapy. Maybe if they'd include sign language in their list, they would actually prevent " . . .delays in cognitive, verbal, behavioral, and emotional development."
These delays occur when hearing parents refuse to raise their kids bilingually. It has nothing to do with deafness and everything to do with resources and communication. Why was I able to overcome my barriers put forth by hearing society and being raised mainstreamed? That's really an update for another day, but the summary is luck/genetics, middle-class resources, and even the argument that people mistakenly believe I've overcome barriers.
It has now been 8 weeks since nursing school started and there are still multiple issues, primarily with captioning the podcasts and videos. I've had to hunt down the materials, tell my access counselor what needs to be captioned, and hope it gets done before I have a quiz or lab skills test. Which means everyone else gets accessed to the materials on time and gets a week to review, but I scramble at the last minute. How is this equal access? Why is it too difficult for them to caption the materials, and then release the materials online for everyone to view at the same time?
As nice as my professors are, their niceness interferes with my expensive education. They do not understand the needs of deaf patients, yet alone deaf students. Their ignorance is not their fault--medical professionals are taught the most offensive methods for communicating with deaf people. The books we read tell us to encourage deaf patients to speak with their voices-- if they feel ashamed--even if the patients don't want to speak-- even if the medical professional finds them difficult to understand!
The books also encourage medical professionals to tell hearing parents to quickly get their "hearing impaired" children to audiologists and fitted with hearing aids so they're not developmentally delayed. The books say hearing loss can be corrected by cochlear implant, hearing aids, audiology and speech therapy. Maybe if they'd include sign language in their list, they would actually prevent " . . .delays in cognitive, verbal, behavioral, and emotional development."
These delays occur when hearing parents refuse to raise their kids bilingually. It has nothing to do with deafness and everything to do with resources and communication. Why was I able to overcome my barriers put forth by hearing society and being raised mainstreamed? That's really an update for another day, but the summary is luck/genetics, middle-class resources, and even the argument that people mistakenly believe I've overcome barriers.
Monday, September 9, 2013
Deaf medical student lawsuit (update)
I've kept my eye on the Deaf Medical Student's lawsuit, and it has disappointing results. To paraphrase, The school argued once Mr. Argenyi graduates, using interpreters could violate patient confidentiality (and therefore he shouldn't use interpreters in school).
Has Creighton University forgotten patients have the legal right to request interpreters? Or how about medical professionals having a responsibility to provide an interpreter when communication is insufficient without one? The jurors agreed the school failed to adhere to ADA, but found it was not intentional. As a result, the school does not owe any money for the interpreting services. Mr. Argenyi will need to request an appeal to be reimbursed for the loans he obtained to provide his own accommodations. Should intent matter in this lawsuit? By refusing to pay for intepreters, that IS deliberately denying accommodations and in my opinion-- the bill belongs to the school.
I believe it was intentional on the school's part to avoid providing accommodations because it is expensive and inconvenient for the school to pay for those services. If they did not make an effort to provide equal access, that was likely done by exhibiting a lackadaisical attitude while under the guise of protecting the school's profit margins. But of course I don't have evidence and my opinion makes zero difference in this lawsuit. I feel sorry for Mr. Argenyi and I hope he completes his medical training. The lawsuit shouldn't stop him from returning to that school for the very reason that the lawsuit happened. The staff will now bend over backwards to make sure they adhere to ADA laws. He can get his revenge by refusing to ever donate as an alumni.
I get it. It's unfair to force schools to pay for deaf peoples' accommodations when the school's end goal is profit. Some people think this means stealing from person A to give to person B. You'd assume a private, religious institution would be more than happy to help out those in need.
I am disappointed that some schools would rather sweep disabled people under the rug because accommodations are expensive, but how else can we improve ourselves if we're limited to min. wage jobs? We may wish we could get through school independently, but we need some help getting us on equal footing with the rest of the world. I'm OK asking for help, and in a few years I will gladly donate to my alumni to pay them back. But shame shame shame on Creighton University!
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As an update to my own nursing school-- I'm busy! I'll write a more detailed updated after the first month has finished.
Has Creighton University forgotten patients have the legal right to request interpreters? Or how about medical professionals having a responsibility to provide an interpreter when communication is insufficient without one? The jurors agreed the school failed to adhere to ADA, but found it was not intentional. As a result, the school does not owe any money for the interpreting services. Mr. Argenyi will need to request an appeal to be reimbursed for the loans he obtained to provide his own accommodations. Should intent matter in this lawsuit? By refusing to pay for intepreters, that IS deliberately denying accommodations and in my opinion-- the bill belongs to the school.
I believe it was intentional on the school's part to avoid providing accommodations because it is expensive and inconvenient for the school to pay for those services. If they did not make an effort to provide equal access, that was likely done by exhibiting a lackadaisical attitude while under the guise of protecting the school's profit margins. But of course I don't have evidence and my opinion makes zero difference in this lawsuit. I feel sorry for Mr. Argenyi and I hope he completes his medical training. The lawsuit shouldn't stop him from returning to that school for the very reason that the lawsuit happened. The staff will now bend over backwards to make sure they adhere to ADA laws. He can get his revenge by refusing to ever donate as an alumni.
I get it. It's unfair to force schools to pay for deaf peoples' accommodations when the school's end goal is profit. Some people think this means stealing from person A to give to person B. You'd assume a private, religious institution would be more than happy to help out those in need.
I am disappointed that some schools would rather sweep disabled people under the rug because accommodations are expensive, but how else can we improve ourselves if we're limited to min. wage jobs? We may wish we could get through school independently, but we need some help getting us on equal footing with the rest of the world. I'm OK asking for help, and in a few years I will gladly donate to my alumni to pay them back. But shame shame shame on Creighton University!
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As an update to my own nursing school-- I'm busy! I'll write a more detailed updated after the first month has finished.
Monday, August 19, 2013
Deaf in the healthcare field
There are two Deaf news I'll be keeping a closer eye on.
The first is about a Deaf woman who filed a lawsuit against her school in Missouri after they kicked her out for being deaf. The school's interim president said:
The student won the lawsuit, but is no longer seeking a nursing career. I'll pay close attention to my own academic and professional development as I approach the clinical stages. I am testing out an electronic stethoscope that may work with my Cochlear Implant, but that is not definite. What will happen to me if I am unable to use a stethoscope? I understand my own limits -- I will never work in an emergency setting. But does that limit on emergency rooms mean I shouldn't be allowed to be a health care professional? That's a narrow view about nurses and physicians if they're categorized only on stethoscope listening abilities. There's more to the medical field than a stethoscope.
The second Deaf news regards a medical student. He embarked on a journey through medical school only to be refused Real Time Captioning -- an accommodation also called CART. ended up getting CART by paying for it out-of-pocket at astronomical costs, but CART is not an accommodation that can follow you into the clinical setting. He won't finish his medical program until the trial is resolved. He is fighting to have assistance in the clinical setting, which funny enough, he could easily get if he were practicing medicine post-med school!
In both cases, it's unfortunate the health care field is out two potential professionals who could have enriched the world as a nurse and a physician. Unfortunately, those two are not alone in being pushed out of the higher-education careers. Educating deaf people is expensive, but educating us and getting us on equal footing during the college years means we'll end up with self-supporting careers and the ability to give back to communities and to the colleges that didn't protest our accommodation requests.
Colleges love alumni who donate money, but if their deaf students must fight for equal access, the deaf students may end up graduating anyway and the school will never see a dime of future donations. The schools are in a lose-lose situation when they fight against equal access. The public is in a lose-lose situation as well because if deaf people don't get communication accessibility to higher education, and they drop out of college, what's going to happen? They are more likely to work minimum wage jobs and at the same time they're eligible for public assistance while working that job! Imagine how much harder it'd be for someone without any competitive skills AND they're deaf to find any available job. It's pretty difficult to get past the interview stage of the hiring process because the interviewer won't stop focusing on our deafness. We are treated as too complicated to deal with instead of being seen as potentially amazing and reliable employees. But when you have higher-education or other competitive/educational/skill advantages, being deaf matters a little bit less.
It bothers me when I learn about deaf/hoh people who have to fight for higher education. I've had my own issues with previous colleges, but I believe my nursing school will do a fantastic job supporting not only my own development, but the rest of my (hearing) class as well.
On a final note, I had my first day of nursing school. So it's only fitting I learned about both of these stories today.
The first is about a Deaf woman who filed a lawsuit against her school in Missouri after they kicked her out for being deaf. The school's interim president said:
The student won the lawsuit, but is no longer seeking a nursing career. I'll pay close attention to my own academic and professional development as I approach the clinical stages. I am testing out an electronic stethoscope that may work with my Cochlear Implant, but that is not definite. What will happen to me if I am unable to use a stethoscope? I understand my own limits -- I will never work in an emergency setting. But does that limit on emergency rooms mean I shouldn't be allowed to be a health care professional? That's a narrow view about nurses and physicians if they're categorized only on stethoscope listening abilities. There's more to the medical field than a stethoscope.
The second Deaf news regards a medical student. He embarked on a journey through medical school only to be refused Real Time Captioning -- an accommodation also called CART. ended up getting CART by paying for it out-of-pocket at astronomical costs, but CART is not an accommodation that can follow you into the clinical setting. He won't finish his medical program until the trial is resolved. He is fighting to have assistance in the clinical setting, which funny enough, he could easily get if he were practicing medicine post-med school!
In both cases, it's unfortunate the health care field is out two potential professionals who could have enriched the world as a nurse and a physician. Unfortunately, those two are not alone in being pushed out of the higher-education careers. Educating deaf people is expensive, but educating us and getting us on equal footing during the college years means we'll end up with self-supporting careers and the ability to give back to communities and to the colleges that didn't protest our accommodation requests.
Colleges love alumni who donate money, but if their deaf students must fight for equal access, the deaf students may end up graduating anyway and the school will never see a dime of future donations. The schools are in a lose-lose situation when they fight against equal access. The public is in a lose-lose situation as well because if deaf people don't get communication accessibility to higher education, and they drop out of college, what's going to happen? They are more likely to work minimum wage jobs and at the same time they're eligible for public assistance while working that job! Imagine how much harder it'd be for someone without any competitive skills AND they're deaf to find any available job. It's pretty difficult to get past the interview stage of the hiring process because the interviewer won't stop focusing on our deafness. We are treated as too complicated to deal with instead of being seen as potentially amazing and reliable employees. But when you have higher-education or other competitive/educational/skill advantages, being deaf matters a little bit less.
It bothers me when I learn about deaf/hoh people who have to fight for higher education. I've had my own issues with previous colleges, but I believe my nursing school will do a fantastic job supporting not only my own development, but the rest of my (hearing) class as well.
On a final note, I had my first day of nursing school. So it's only fitting I learned about both of these stories today.
Saturday, July 20, 2013
The price of hearing.
So...my CI processor may have died.
Two years ago I replaced my original processor with a refurbished one for $900. Including batteries, that processor cost $1400 for the last two years.
I will look into replacing parts or another refurbished processor. If those are no longer an option, then I will need to upgrade to the newest processor. What's the cost for an upgrade? $9,000. That does not have an extra zero. Dang, last time I checked on upgrading, it was "only" 8 grand.
When I gathered quotes for health insurance in January, they all stated CI external parts would not be covered and I signed up for my husband's policy. I will call my insurance on Monday and provide billing codes to double-check my coverage. My benefits paperwork is fuzzy about Cochlear Implants. It does not cover hearing aid services, it specifically excludes external equipment for bone anchored hearing aids (two links provided) but a BAHA is not a CI. After inputting the CI repair/replacement/upgrade codes online for "other services provided", it states prior authorization is required for CI repairs or upgrades. Perhaps they overlooked that page and this coverage is no longer offered. I hope all I need to do is receive authorization because I am not in a financial place in my life where I can afford the 9 grand price tag.
When it comes to hearing technology, what does it cost? I'll cover the two I've personally use: Hearing Aids and Cochlear Implant.
If someone uses Hearing Aids:
People must pay out of pocket because it's rarely covered by insurance. Even when insurance covers hearing aids, it's only for $1,000. Hearing aids are expensive! There are $500 models out there but just because you can only afford $500 doesn't mean you'll be able to hear anything.
Batteries are cheap compared to the actual hearing aids. I've forgotten how much I used to spend but it looks like people spend between $30-150 annually.
If someone uses a Cochlear Implant:
Cost of initial surgery: free with deductible. Depending on your insurance plan.
Batteries are $250+ annually. This includes one re-chargeable battery and backup disposables. Double this price for those with bilateral CIs.
-Price of individual pieces. What's broken on mine could be as cheap as $300, as expensive as $3000. (That's why if it's not the cheaper piece, you're better off getting refurbished).
-Refurbished processor is $900.
-Replacement or upgrades is $9000.(Let's assume Ins. will NOT cover this). update 7/23: definitely not covered. I'll be looking into ways to get my CI covered, because I certainly do not have 9 grand hiding under my sofa.
Just for fun, I'll mention the CI-compatible stethoscope I'll be using for Nursing school is going to cost $1500. I'm currently in the process of purchasing the stethoscope package. A fully functioning stethoscope will be the 'scope itself, software, and the accessory cord to connect to my CI processor. I will require an Audiologist to help me with the software and training, but at least my co-pay will only be $50 per visit.
A person who uses a hearing aid or Cochlear Implant will always default to deafness when the equipment breaks. And it will break. It will need repairs, replacements, and someday the equipment will be outdated and your choice is to upgrade or have nothing. If this person can afford it, they will have a backup in their dresser drawer... If not, they will be deaf until their device is fixed. To some, that isn't bothersome, to others it would drastically reduce their quality of life.
I need to replace my processor, purchase stethoscope, learn how to use it.
Oh, and by the way, I start nursing school in one month. No pressure.
That's the price of hearing.
Two years ago I replaced my original processor with a refurbished one for $900. Including batteries, that processor cost $1400 for the last two years.
I will look into replacing parts or another refurbished processor. If those are no longer an option, then I will need to upgrade to the newest processor. What's the cost for an upgrade? $9,000. That does not have an extra zero. Dang, last time I checked on upgrading, it was "only" 8 grand.
When I gathered quotes for health insurance in January, they all stated CI external parts would not be covered and I signed up for my husband's policy. I will call my insurance on Monday and provide billing codes to double-check my coverage. My benefits paperwork is fuzzy about Cochlear Implants. It does not cover hearing aid services, it specifically excludes external equipment for bone anchored hearing aids (two links provided) but a BAHA is not a CI. After inputting the CI repair/replacement/upgrade codes online for "other services provided", it states prior authorization is required for CI repairs or upgrades. Perhaps they overlooked that page and this coverage is no longer offered. I hope all I need to do is receive authorization because I am not in a financial place in my life where I can afford the 9 grand price tag.
When it comes to hearing technology, what does it cost? I'll cover the two I've personally use: Hearing Aids and Cochlear Implant.
If someone uses Hearing Aids:
People must pay out of pocket because it's rarely covered by insurance. Even when insurance covers hearing aids, it's only for $1,000. Hearing aids are expensive! There are $500 models out there but just because you can only afford $500 doesn't mean you'll be able to hear anything.
Batteries are cheap compared to the actual hearing aids. I've forgotten how much I used to spend but it looks like people spend between $30-150 annually.
If someone uses a Cochlear Implant:
Cost of initial surgery: free with deductible. Depending on your insurance plan.
Batteries are $250+ annually. This includes one re-chargeable battery and backup disposables. Double this price for those with bilateral CIs.
-Price of individual pieces. What's broken on mine could be as cheap as $300, as expensive as $3000. (That's why if it's not the cheaper piece, you're better off getting refurbished).
-Refurbished processor is $900.
-Replacement or upgrades is $9000.
Just for fun, I'll mention the CI-compatible stethoscope I'll be using for Nursing school is going to cost $1500. I'm currently in the process of purchasing the stethoscope package. A fully functioning stethoscope will be the 'scope itself, software, and the accessory cord to connect to my CI processor. I will require an Audiologist to help me with the software and training, but at least my co-pay will only be $50 per visit.
A person who uses a hearing aid or Cochlear Implant will always default to deafness when the equipment breaks. And it will break. It will need repairs, replacements, and someday the equipment will be outdated and your choice is to upgrade or have nothing. If this person can afford it, they will have a backup in their dresser drawer... If not, they will be deaf until their device is fixed. To some, that isn't bothersome, to others it would drastically reduce their quality of life.
I need to replace my processor, purchase stethoscope, learn how to use it.
Oh, and by the way, I start nursing school in one month. No pressure.
That's the price of hearing.
Saturday, June 22, 2013
Update on movie theaters
In a previous post, I mentioned the improved accessibility for deaf/HOH customers at movie theaters.
Last February I said there's a 1-2 week wait to see select few movies available with captions. In the last month, I've gone to two movies on opening night. Opening night!
Curious what the captions look like? It's an adjustable pole that sits in the cup holder and has a personal screen, so it doesn't annoy hearing customers. The captions can be higher or lower based on individual preference. It doesn't matter where I sit in the theater, I'll be able to read the captions.
Cinemark Palace at the Plaza is my choice for seeing movies because they're close to my house and they do a fantastic job offering multiple choices for deaf/HOH customers. Or more accurately, I wouldn't be a customer if captions weren't available. As of June 22nd, 2013. This particular theater has 10/12 captioned movies and for those ten movies, every show time has captions, even the 3D listings. This is a phenomenal improvement.
Last February I said there's a 1-2 week wait to see select few movies available with captions. In the last month, I've gone to two movies on opening night. Opening night!
Curious what the captions look like? It's an adjustable pole that sits in the cup holder and has a personal screen, so it doesn't annoy hearing customers. The captions can be higher or lower based on individual preference. It doesn't matter where I sit in the theater, I'll be able to read the captions.
Cinemark Palace at the Plaza is my choice for seeing movies because they're close to my house and they do a fantastic job offering multiple choices for deaf/HOH customers. Or more accurately, I wouldn't be a customer if captions weren't available. As of June 22nd, 2013. This particular theater has 10/12 captioned movies and for those ten movies, every show time has captions, even the 3D listings. This is a phenomenal improvement.
One additional update to my February entry:
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've yet to test the glasses. But as of June 22nd, 2013. Regal Kansas City Cinemas 18 has captions for 17/18 movies for all show times. Cinemark isn't alone in the drive towards obtaining deaf/HOH customers. I will eventually catch a movie at Regal Kansas City Cinemas to see what it's like to wear the Sony glasses, but this is primarily an update about how show times and accessibility has shot up in the last four months.
One way to describe how I feel about seeing movies in theaters:
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've yet to test the glasses. But as of June 22nd, 2013. Regal Kansas City Cinemas 18 has captions for 17/18 movies for all show times. Cinemark isn't alone in the drive towards obtaining deaf/HOH customers. I will eventually catch a movie at Regal Kansas City Cinemas to see what it's like to wear the Sony glasses, but this is primarily an update about how show times and accessibility has shot up in the last four months.
One way to describe how I feel about seeing movies in theaters:
Post-Surgery pictures.
Here is a previous photo from post-op. My surgeon, Dr. Orrin Terry (or his surgical team) followed a path behind my ear and upwards.
I'm almost disappointed I don't have battle wounds to show off. Whoever opened and closed did an impressive job to minimize scarring. I can only imagine the improvements surgeons have made in the field since 2007. Thanks, Dr. Terry & team!
As an example of medical history shaving, surgical surface area and stitches, this woman got her first C.I. in 1994.
Here's an updated picture of my ear:
Here's an updated picture of my ear:
I'm almost disappointed I don't have battle wounds to show off. Whoever opened and closed did an impressive job to minimize scarring. I can only imagine the improvements surgeons have made in the field since 2007. Thanks, Dr. Terry & team!
Monday, May 13, 2013
Q&A: What is your Cell Phone plan?
Since I'm unable to make traditional phone calls, people have been curious what kind of cell phone plan I have, or they've wondered why I bothered with a cell phone in the first place.
When cell phones began its first foothold in society--Let say, the year 2000, there weren't any options for data&text-only plans. You had to pay for phone minutes, or you had nothing. It wasn't until I got T-mobile's Sidekick II in 2004 and the SKIII in 2006 that I was able to get an unlimited data&text plan for $30/month. I loved T-mobile for being my first available company to offer unlimited texts, and then even more once they allowed customers to opt out of phone minutes.
T-mobile was excellent for Deaf customers. I loved them!
As time went by, I started drinking the Apple Koolaid and I wanted an Iphone. It wasn't until I learned about AT&T's TAP (Iphone plan and other) that purchasing one became affordable. Thanks to TAP, I've had an Iphone since 2009. Similar to the plan offered by T-mobile, TAP allows Deaf people to only pay for data and texts. I have the unlimited data & unlimited texting plan for $50/month. I'm grandfathered into this plan and won't be switching anytime soon.
The downside to TAP is it's only offered to Deaf customers (or those with speech difficulty) who provide medical proof. So if you're you're hearing and you don't make phone calls, tough luck, you can't get this plan. This may seem unfair, especially back when AT&T had exclusive contract for the Iphone (and yes, hearing people complained) but there were other phone companies out there (like Tmobile) that offered text/data-only plans where medical proof wasn't required.
AT&T's TAP would be an example where improved accessibility for the deaf isn't "equal" access ( The law does not require Equal Access for deaf people to use cell phones) since hearing people were and are still unable to purchase the same plan. Hearing people could get data-only plans through other companies, but the most vocal complaints came from iphone users who were angry about their choice to overpay for phone minutes. They were using their phone minutes, they were just unhappy a select minority didn't have to pay for phone minutes they'd never use.
Sympathy level: zero
So what is my phone used for? Texting, web browsing, Google Maps, settling arguments, Internet Relay Phone Calls (using an app), camera, vibrating travel alarm clock, etc. In the past I've used Google Voice services to translate my Voice Mail messages. I generally do not get phone calls, but occasionally a school or business will contact me and the voice-to-text translation tool is useful. When I use the forwarding+Google Voice feature, I am charged the standard phone minute rate. I could find cheaper unlimited data&unlimited text plans, but I'm satisfied with my iphone and I'll stick with it for now.
When cell phones began its first foothold in society--Let say, the year 2000, there weren't any options for data&text-only plans. You had to pay for phone minutes, or you had nothing. It wasn't until I got T-mobile's Sidekick II in 2004 and the SKIII in 2006 that I was able to get an unlimited data&text plan for $30/month. I loved T-mobile for being my first available company to offer unlimited texts, and then even more once they allowed customers to opt out of phone minutes.
T-mobile was excellent for Deaf customers. I loved them!
As time went by, I started drinking the Apple Koolaid and I wanted an Iphone. It wasn't until I learned about AT&T's TAP (Iphone plan and other) that purchasing one became affordable. Thanks to TAP, I've had an Iphone since 2009. Similar to the plan offered by T-mobile, TAP allows Deaf people to only pay for data and texts. I have the unlimited data & unlimited texting plan for $50/month. I'm grandfathered into this plan and won't be switching anytime soon.
The downside to TAP is it's only offered to Deaf customers (or those with speech difficulty) who provide medical proof. So if you're you're hearing and you don't make phone calls, tough luck, you can't get this plan. This may seem unfair, especially back when AT&T had exclusive contract for the Iphone (and yes, hearing people complained) but there were other phone companies out there (like Tmobile) that offered text/data-only plans where medical proof wasn't required.
AT&T's TAP would be an example where improved accessibility for the deaf isn't "equal" access ( The law does not require Equal Access for deaf people to use cell phones) since hearing people were and are still unable to purchase the same plan. Hearing people could get data-only plans through other companies, but the most vocal complaints came from iphone users who were angry about their choice to overpay for phone minutes. They were using their phone minutes, they were just unhappy a select minority didn't have to pay for phone minutes they'd never use.
Sympathy level: zero
So what is my phone used for? Texting, web browsing, Google Maps, settling arguments, Internet Relay Phone Calls (using an app), camera, vibrating travel alarm clock, etc. In the past I've used Google Voice services to translate my Voice Mail messages. I generally do not get phone calls, but occasionally a school or business will contact me and the voice-to-text translation tool is useful. When I use the forwarding+Google Voice feature, I am charged the standard phone minute rate. I could find cheaper unlimited data&unlimited text plans, but I'm satisfied with my iphone and I'll stick with it for now.
Vulnerability during a phone call
I'm going to share an awkward subject that I'd rather leave off my blog but I believe it's important to be honest about a variety of topics. Awkward, embarrassing, silly, serious, all of it belongs on here.
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There's a level of vulnerability involved when I make my own phone calls. During the call, I'm communicating with two people: The faceless relay employee and the business agent. When I make phone calls to my credit cards or bank, I worry the interpreter is writing down my information for fraudulent intents. I can refuse to answer a couple of security answers, but I can't refuse all questions. How much information does it take to have your identity stolen?
During my last phone call, my credit card company interrupted the call to directly ask the interpreter to verify their company and employee ID number. Talking directly to the interpreter shows poor etiquette, but in this case--that is an excellent addition to security policies and to date they are the only company I've encountered with this new policy. As much as I appreciate relay technology, I'm constantly worried because it only takes one shady employee to use my information for identity theft or fraudulent purchases. But what else can I do other than force a hearing friend or family member to handle 100% of my phone calls?
Handling my own phone calls is one way to feel independent, but it comes with risks. I've had fraudulent purchases on my accounts twice. Once is entirely unrelated to phone calls (Papa Johns inside Houston Int'l Airport), the second time may have been a relay employee but I can't say that with certainty. Both of those occurred over 5 years ago. It could be unnecessary paranoia, but it's one that will stick with me unless I give up and make a hearing person my Power of Attorney. If it were possible, I would never make phone calls and handle everything in person. That would be the easiest solution, but it's not an option.
It might seem simple: "Get someone else to handle your phone calls, what's the big deal?" But handling phone calls is just one of those things people take for granted. It's easy to do and accessible everywhere-- If you're hearing. It's an everyday habit for most hearing people and probably isn't associated with independence. When other people have handled my phone calls, I'm left without a voice of my own. That feeling of helplessness is why I continue to make my own phone calls despite the risks.
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There's a level of vulnerability involved when I make my own phone calls. During the call, I'm communicating with two people: The faceless relay employee and the business agent. When I make phone calls to my credit cards or bank, I worry the interpreter is writing down my information for fraudulent intents. I can refuse to answer a couple of security answers, but I can't refuse all questions. How much information does it take to have your identity stolen?
During my last phone call, my credit card company interrupted the call to directly ask the interpreter to verify their company and employee ID number. Talking directly to the interpreter shows poor etiquette, but in this case--that is an excellent addition to security policies and to date they are the only company I've encountered with this new policy. As much as I appreciate relay technology, I'm constantly worried because it only takes one shady employee to use my information for identity theft or fraudulent purchases. But what else can I do other than force a hearing friend or family member to handle 100% of my phone calls?
Handling my own phone calls is one way to feel independent, but it comes with risks. I've had fraudulent purchases on my accounts twice. Once is entirely unrelated to phone calls (Papa Johns inside Houston Int'l Airport), the second time may have been a relay employee but I can't say that with certainty. Both of those occurred over 5 years ago. It could be unnecessary paranoia, but it's one that will stick with me unless I give up and make a hearing person my Power of Attorney. If it were possible, I would never make phone calls and handle everything in person. That would be the easiest solution, but it's not an option.
It might seem simple: "Get someone else to handle your phone calls, what's the big deal?" But handling phone calls is just one of those things people take for granted. It's easy to do and accessible everywhere-- If you're hearing. It's an everyday habit for most hearing people and probably isn't associated with independence. When other people have handled my phone calls, I'm left without a voice of my own. That feeling of helplessness is why I continue to make my own phone calls despite the risks.
Thursday, May 2, 2013
Nursing School: The next step and long-term goals
I'd like to announce I've officially been accepted into a Bachelor of Science in Nursing program. It will be two years before I could claim I'm a deaf Nurse, but it's an exciting next step! I'm sure I will have new experiences in how people treat me as a deaf student. Will they be impressed? Will they assume I'm dumb? Will they all treat me like I'm a burden? We'll see.
In a previous post, I mentioned it's uncommon to meet Deaf role models in a medical profession. I've never met any, I've never known of anyone nearby. I've only ever read about them through online websites. They seem fictional. My hope is to eventually be a prominent figure in the field and to encourage other deaf/HOH people to enter a medical profession. There's not enough deaf role models encouraging deaf/HOH people they're capable of more than a minimum wage job. Who are the people actively showing them they aren't dumb just because they can't hear (which is how the hearing world treats us both in body language and verbally). Who is showing them they can have support going after their dream career? Encouragement needs to start while they're young. Exposure to Deaf Professionals is a missing key for kids who are involved in the hearing world. This may not be as big of an issue in Deaf Culture. Those heavily intertwined in Deaf Culture may have all the support they need. I'm not certain, because that wasn't my life.
Once I've got my own student loan debt paid, I'd like to set up a scholarship for Deaf/HOH students interested in medical professions. Unlike the other scholarships where you must fit exact criteria, I would like mine to be broad. No age restriction, no communication restriction, no technology restriction ("must wear hearing aids or Cochlear Implant."), nothing except the desire for a medical career. Physician, Veterinarian, Nursing, Vet. Tech, all of that is fine. But the scholarship idea is only an idea. I may not be able to get started on it for another 5 years. Maybe I will be forced to set up strict guidelines for applicants, I'll cross that bridge years down the line.
I need to reinforce my ASL skills. My eventual goal as a nurse is to work in pediatrics and with Deaf patients. There aren't any Deaf-Only hospitals but one possibility is to become a traveling nurse. Legality aside (unsure the protocol for when bilingual nurses can communicate directly with patient and when the patient needs to speak to the physician via interpreting), it would be beneficial to hospitals to hire Nurses who are fluent in ASL. If they have a Nurse who speaks ASL who happens to be on shift, it won't take up to 3 hours to get an interpreter to the hospital. Although I will never work in an emergency department where it would be crucial to communicate ASAP, a fluent staff member for all other departments would preferable to waiting hours. An interpreter may be called anyways, but at least the patients wouldn't have to sit there in silence or relying on hearing family members (if any).
So there you go, I'm now on the next step towards becoming a Nurse. I will start in August.
In a previous post, I mentioned it's uncommon to meet Deaf role models in a medical profession. I've never met any, I've never known of anyone nearby. I've only ever read about them through online websites. They seem fictional. My hope is to eventually be a prominent figure in the field and to encourage other deaf/HOH people to enter a medical profession. There's not enough deaf role models encouraging deaf/HOH people they're capable of more than a minimum wage job. Who are the people actively showing them they aren't dumb just because they can't hear (which is how the hearing world treats us both in body language and verbally). Who is showing them they can have support going after their dream career? Encouragement needs to start while they're young. Exposure to Deaf Professionals is a missing key for kids who are involved in the hearing world. This may not be as big of an issue in Deaf Culture. Those heavily intertwined in Deaf Culture may have all the support they need. I'm not certain, because that wasn't my life.
Once I've got my own student loan debt paid, I'd like to set up a scholarship for Deaf/HOH students interested in medical professions. Unlike the other scholarships where you must fit exact criteria, I would like mine to be broad. No age restriction, no communication restriction, no technology restriction ("must wear hearing aids or Cochlear Implant."), nothing except the desire for a medical career. Physician, Veterinarian, Nursing, Vet. Tech, all of that is fine. But the scholarship idea is only an idea. I may not be able to get started on it for another 5 years. Maybe I will be forced to set up strict guidelines for applicants, I'll cross that bridge years down the line.
I need to reinforce my ASL skills. My eventual goal as a nurse is to work in pediatrics and with Deaf patients. There aren't any Deaf-Only hospitals but one possibility is to become a traveling nurse. Legality aside (unsure the protocol for when bilingual nurses can communicate directly with patient and when the patient needs to speak to the physician via interpreting), it would be beneficial to hospitals to hire Nurses who are fluent in ASL. If they have a Nurse who speaks ASL who happens to be on shift, it won't take up to 3 hours to get an interpreter to the hospital. Although I will never work in an emergency department where it would be crucial to communicate ASAP, a fluent staff member for all other departments would preferable to waiting hours. An interpreter may be called anyways, but at least the patients wouldn't have to sit there in silence or relying on hearing family members (if any).
So there you go, I'm now on the next step towards becoming a Nurse. I will start in August.
Saturday, March 30, 2013
Pros to being deaf
There are a fair number of cons for being deaf in a hearing culture (fewer in the Deaf world).
What are the pros? (I'm leaving out all ASL-related pros)
Announcing my deafness is the best way to get someone to stop talking to me (e.g. solicitors).
I've never had to deal with verbal sexual harassment from strangers in public because most men don't try to get your attention before they spew the verbal garbage (which is also a con, because nobody is telling them what they're doing is not OK).
I wasn't effectively bullied while I was in school. It's harder to be bullied when you don't know exactly what someone is saying. I could read their body language and understood what they were trying to do, but they ultimately failed to get under my skin. One person gave up trying to bully me with words and started to bark whenever he saw me. Little did he know that I found this amusing because it made him look ridiculous and idiotic.
(This does not mean deaf people can't be bullied).
I'm better than most people at reading body language. This is particularly important because almost everyone fails adjust their body language when they're try to hide their feelings behind their tone of voice.
I'm not bothered or startled by loud or annoying sounds. Or if a sound bothers me, I can just turn my CI off.
I can't eavesdrop on other peoples' conversations in public places or participate in workplace gossip. This might be a con to some people, but from my perspective, I can't be annoyed by their topic choices.
I'll never be woken up by the sound of a dripping faucet, upstair neighbors stomping around their apartment, dogs barking, ambulances, partner snoring, etc.
Since I read lips, I could eavesdrop on conversations from across the room if I wanted to. It's more trouble than it's worth, but the option is there.
I will never, ever have to deal with telemarketers.
It seems perfectly normal to watch TV using only captions and no sounds. I also only listen to music using earbuds so I never disturb other people in the house.
If I don't want to "listen" to someone, I can simply look elsewhere or walk away.
I'm sure there are other pros that I've left out!
What are the pros? (I'm leaving out all ASL-related pros)
Announcing my deafness is the best way to get someone to stop talking to me (e.g. solicitors).
I've never had to deal with verbal sexual harassment from strangers in public because most men don't try to get your attention before they spew the verbal garbage (which is also a con, because nobody is telling them what they're doing is not OK).
I wasn't effectively bullied while I was in school. It's harder to be bullied when you don't know exactly what someone is saying. I could read their body language and understood what they were trying to do, but they ultimately failed to get under my skin. One person gave up trying to bully me with words and started to bark whenever he saw me. Little did he know that I found this amusing because it made him look ridiculous and idiotic.
(This does not mean deaf people can't be bullied).
I'm better than most people at reading body language. This is particularly important because almost everyone fails adjust their body language when they're try to hide their feelings behind their tone of voice.
I'm not bothered or startled by loud or annoying sounds. Or if a sound bothers me, I can just turn my CI off.
I can't eavesdrop on other peoples' conversations in public places or participate in workplace gossip. This might be a con to some people, but from my perspective, I can't be annoyed by their topic choices.
I'll never be woken up by the sound of a dripping faucet, upstair neighbors stomping around their apartment, dogs barking, ambulances, partner snoring, etc.
Since I read lips, I could eavesdrop on conversations from across the room if I wanted to. It's more trouble than it's worth, but the option is there.
I will never, ever have to deal with telemarketers.
It seems perfectly normal to watch TV using only captions and no sounds. I also only listen to music using earbuds so I never disturb other people in the house.
If I don't want to "listen" to someone, I can simply look elsewhere or walk away.
I'm sure there are other pros that I've left out!
Thursday, March 7, 2013
Cochlear Implant in a bilingual home
I'd like to recommend a blog posting highlighting an excellent example of a parent raising their deaf/HOH child in a bilingual home. The deaf child asked to get a CI when she was 7 years old. The key to the success was the fact their home was always bilingual. In order for the CI to be a successful in every way possible, you want to give your child the most opportunities for communication. Notice the emphasis on communication, not language. A lot of hearing parents measure the success of their deaf child functioning in the hearing world as the ability to speak English. Speaking English isn't adequate by itself. You need effective two-way communication. Don't throw your child into speech therapy and make them do all the work to understand you (speech therapy, auditory training, reading lips, etc). Meet them halfway by raising them in a bilingual home.
Here's a couple excerpts of the parent's blog I'm referring to:
" Speech is not a language. Speech is one way to deliver a language.English is a language, American Sign Language is a language, but speech… speech is a skill. "
"Technology frequently changes and even fails..... Batteries die and parts break... Sign language will never fail...you never have to “turn it on” ..."
Here's a couple excerpts of the parent's blog I'm referring to:
" Speech is not a language. Speech is one way to deliver a language.English is a language, American Sign Language is a language, but speech… speech is a skill. "
"Technology frequently changes and even fails..... Batteries die and parts break... Sign language will never fail...you never have to “turn it on” ..."
Friday, March 1, 2013
Q&A: School
What was school like for you?
I wasn't raised with ASL and I didn't attend a school for the Deaf, I was mainstreamed.
I attended hearing public schools from Kindergarten until High school. I had zero equal access or accommodations other than attempting to sit up front so I could read the teachers' lips. I didn't have note takers, interpreters, stenographers, captioned movies, nothing. Back then, I thought ADA only applied to wheelchair accessibility.
How did I get through public school? Barely. I hated school. Sure, I was good at homework, I loved reading and learning new things, but reading lips strained my eyes. Staring at the same object (teacher's mouth) is difficult physically and mentally. Trying to read lips of a teacher that's always moving around the room combined with guessing the individual words being said and trying to process the information I'm learning was asking too much. Most of the time, I'd fake that I was paying attention and would try my best to get my homework/reading done while I was in class. I had to teach myself 90% of everything I learned in school. Nobody ever realized my struggles and how much I was doing on my own (because one-on-one, I usually communicate just fine), but I didn't realize I had alternatives.
I spent my time in school waiting to go home and learn things solo. The auditory process my peers got from school gave them a head start because teachers can explain the book in alternatives ways that makes the information click. Eureka!! I wasn't able to get the eureka moments at school unless I personally figured out why the teachers wrote (whatever) on the chalkboard.
My frustrations with public mainstreamed school is the reason I graduated a year early. After I begged, my parents took me out of the High School in 10th grade and enrolled me into a charter public school.
It was all self-taught. The school gave me a stack of paper, I'd finish them, then my parents would drop them back at the school. This change meant I no longer had to waste time pretending I was getting benefits from being inside a classroom. I was still teaching myself, that was the same. I didn't have limits for how many credits I completed so I finished High School a year early.
After High School, I attempted to go to college and I immediately flunked out. Self-teaching no longer worked with more complex materials, and seemed to require unfair efforts on my part when the education was no longer free. But I still didn't know about equal access. I decided to drop out, focus on working minimum wage jobs and I pushed school off until later.
This second time I attempted college, I learned about disability department. I registered with them and they provided me with a note taker. This note taker was a volunteer from my classes (only one) who would write on carbon copy paper. I got a left-handed male with terrible handwriting that I could barely read. This still wasn't adequate enough for me to stick with school. I still had to self-teach, read lips, and crossed my fingers my classmate's notes would give me additional information I didn't catch in class. It didn't work. I finished the semester but I got Cs and an F. I knew I was capable of better, but I didn't know what else I could do. I dropped out again, saved up money, traveled around North America, and came back for a third attempt for school during my early 20s.
Was the third time the charm? Yes. Because this time the new counselor at the disability department set me up with CART/Stenographer without me specifically asking for it. I didn't know what it was at the time. I went into that school semester thinking I'd get another awful note taker, but what else could I do? Work minimum wage forever? ( Job prospects as a deaf person can be severely limited unless you have specialized skills, which I didn't have) I couldn't use ASL interpreter and I didn't know CART existed. I knew about equal access, but I figured note takers and captioned movies were the best that I could get. I no longer remember who that counselor was, but she made a tremendous and positive impact on my life by informing me about alternatives.
After obtaining CART services, I thrived in school. CART/stenographer/live captioning services is the closest thing I can get to having equal access in education. For once in my life, I was able to follow along with lectures. I didn't have to miss out on information when I looked down to write notes, everything the stenographer heard, I could read. It's not perfect, I could probably list a dozen imperfections or difficulties, but it's a phenomenal improvement from my other educational experiences. This is the best I'll ever be able to get.
My educational journey is still in progress. After my 3rd time attempting college, I only attended part-time. Now however, I am currently full-time and I hope to get my pre-requisite courses done by Summer 2014. One of the downsides of attending part-time is that a lot of professional programs require the science classes to be within 5 years. Mine have started to expire and I have a couple of courses I need to re-take. I've applied to 2-year Bachelor's degree nursing schools and I'm on the path towards applying for Veterinary and possibly Pharmacy schools as well. What can I say? I have a variety of interests and these fields have an overlap of pre-req courses. When I get on an official path to professional school, I will certainly have even more stories to share as a deaf student in the hearing world. How many Deaf medical professionals do you know? I've never met any but I know they are out there. It'd be nice to have more positive and well-known role models for career fields. Particularly for people outside of the Deaf community because there are a lot of deaf/HOH who didn't get to grow up with Deaf culture and regrettably, are still not involved (myself included).
More than likely the best way I can explain what school was like for me until my 3rd time in college is that it felt like I was transplanted into a school where everyone else spoke French and I didn't. Life can't always be like an episode of the Simpsons where you just one day: Eureka! and you suddenly speak and understand French perfectly. My experiences with hearing aids and Cochlear Implant is perhaps similar, it's not an overnight switch, which is what most people subconsciously expect from CI surgery. You don't understand everything the first time it's turned on (all those youtube videos? Exaggerations). Things may never change when it comes to interacting with the hearing world at the same pace they can communicate with each other. What can change is my interactions with people who are fluent in ASL.
I wasn't raised with ASL and I didn't attend a school for the Deaf, I was mainstreamed.
I attended hearing public schools from Kindergarten until High school. I had zero equal access or accommodations other than attempting to sit up front so I could read the teachers' lips. I didn't have note takers, interpreters, stenographers, captioned movies, nothing. Back then, I thought ADA only applied to wheelchair accessibility.
How did I get through public school? Barely. I hated school. Sure, I was good at homework, I loved reading and learning new things, but reading lips strained my eyes. Staring at the same object (teacher's mouth) is difficult physically and mentally. Trying to read lips of a teacher that's always moving around the room combined with guessing the individual words being said and trying to process the information I'm learning was asking too much. Most of the time, I'd fake that I was paying attention and would try my best to get my homework/reading done while I was in class. I had to teach myself 90% of everything I learned in school. Nobody ever realized my struggles and how much I was doing on my own (because one-on-one, I usually communicate just fine), but I didn't realize I had alternatives.
I spent my time in school waiting to go home and learn things solo. The auditory process my peers got from school gave them a head start because teachers can explain the book in alternatives ways that makes the information click. Eureka!! I wasn't able to get the eureka moments at school unless I personally figured out why the teachers wrote (whatever) on the chalkboard.
My frustrations with public mainstreamed school is the reason I graduated a year early. After I begged, my parents took me out of the High School in 10th grade and enrolled me into a charter public school.
It was all self-taught. The school gave me a stack of paper, I'd finish them, then my parents would drop them back at the school. This change meant I no longer had to waste time pretending I was getting benefits from being inside a classroom. I was still teaching myself, that was the same. I didn't have limits for how many credits I completed so I finished High School a year early.
After High School, I attempted to go to college and I immediately flunked out. Self-teaching no longer worked with more complex materials, and seemed to require unfair efforts on my part when the education was no longer free. But I still didn't know about equal access. I decided to drop out, focus on working minimum wage jobs and I pushed school off until later.
This second time I attempted college, I learned about disability department. I registered with them and they provided me with a note taker. This note taker was a volunteer from my classes (only one) who would write on carbon copy paper. I got a left-handed male with terrible handwriting that I could barely read. This still wasn't adequate enough for me to stick with school. I still had to self-teach, read lips, and crossed my fingers my classmate's notes would give me additional information I didn't catch in class. It didn't work. I finished the semester but I got Cs and an F. I knew I was capable of better, but I didn't know what else I could do. I dropped out again, saved up money, traveled around North America, and came back for a third attempt for school during my early 20s.
Was the third time the charm? Yes. Because this time the new counselor at the disability department set me up with CART/Stenographer without me specifically asking for it. I didn't know what it was at the time. I went into that school semester thinking I'd get another awful note taker, but what else could I do? Work minimum wage forever? ( Job prospects as a deaf person can be severely limited unless you have specialized skills, which I didn't have) I couldn't use ASL interpreter and I didn't know CART existed. I knew about equal access, but I figured note takers and captioned movies were the best that I could get. I no longer remember who that counselor was, but she made a tremendous and positive impact on my life by informing me about alternatives.
After obtaining CART services, I thrived in school. CART/stenographer/live captioning services is the closest thing I can get to having equal access in education. For once in my life, I was able to follow along with lectures. I didn't have to miss out on information when I looked down to write notes, everything the stenographer heard, I could read. It's not perfect, I could probably list a dozen imperfections or difficulties, but it's a phenomenal improvement from my other educational experiences. This is the best I'll ever be able to get.
My educational journey is still in progress. After my 3rd time attempting college, I only attended part-time. Now however, I am currently full-time and I hope to get my pre-requisite courses done by Summer 2014. One of the downsides of attending part-time is that a lot of professional programs require the science classes to be within 5 years. Mine have started to expire and I have a couple of courses I need to re-take. I've applied to 2-year Bachelor's degree nursing schools and I'm on the path towards applying for Veterinary and possibly Pharmacy schools as well. What can I say? I have a variety of interests and these fields have an overlap of pre-req courses. When I get on an official path to professional school, I will certainly have even more stories to share as a deaf student in the hearing world. How many Deaf medical professionals do you know? I've never met any but I know they are out there. It'd be nice to have more positive and well-known role models for career fields. Particularly for people outside of the Deaf community because there are a lot of deaf/HOH who didn't get to grow up with Deaf culture and regrettably, are still not involved (myself included).
More than likely the best way I can explain what school was like for me until my 3rd time in college is that it felt like I was transplanted into a school where everyone else spoke French and I didn't. Life can't always be like an episode of the Simpsons where you just one day: Eureka! and you suddenly speak and understand French perfectly. My experiences with hearing aids and Cochlear Implant is perhaps similar, it's not an overnight switch, which is what most people subconsciously expect from CI surgery. You don't understand everything the first time it's turned on (all those youtube videos? Exaggerations). Things may never change when it comes to interacting with the hearing world at the same pace they can communicate with each other. What can change is my interactions with people who are fluent in ASL.
Monday, February 25, 2013
My Deaf Accent
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.
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.
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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?