[TOPIC] Deafness, Deaf culture, and Gallaudet

Hi,
I was born profoundly deaf in one ear and severely deaf in the other. At first I had hearing aids, and then received a cochlear implant in one ear when I was nine years old. Now I have implants in both ears, and have close-to-normal hearing.
As for being born deaf, there's a pretty common genetic mutation called "Connexin 26," which is the most common reason behind a baby being born deaf. Of course, deafness can also run in the family. If the mother was exposed to German measles during pregnancy, that can also result in a deaf baby. Then there are various syndromes that might be a good idea to look up, such as Usher, Waartenburg, and others.
Now, I've been mainstreamed my entire life. Generally being mainstreamed when you're deaf means you're in a regular classroom with other hearing children. In my case, I never used a sign language interpreter (never learned it), and generally relied on my own devices with some support from my auditory and speech therapists. I occasionally used FM/trainer devices, which basically act as microphones for speakers in a classroom. I always hated them, so I pretty much stopped using them after 3rd or 4th grade. Since my original implant worked very well for me, it was possible for me to become very self-sufficient in school without a lot of extra support.
If you'd like more detail or want to ask other questions, please feel free to ask. Hope this info is helpful.

BTW, I should probably clarify this--I would not be considered a member of the Deaf culture. As a result I can't give you a lot of in-depth info about Deaf culture or Gallaudet, but I'm happy to give more input on mainstreaming, cochlear implants, and the cochlear implant/Deaf culture controversy.

I can't answer a lot of your questions, since I'm not deaf myself, but I did study sign language for a while, and they covered some deaf culture with it. The thing is, being accepted in deaf culture hinges a lot on whether you know sign language or not. It's kind of like how here in the US we won't typically accept immigrants until they learn English. In fact, some deaf parents who have been in the deaf culture their whole lives are strongly against their children getting cochlear implants and/or being mainstreamed, because they feel it's taking the children out of their culture. If this is a big issue in your novel, I highly recommend watching "The Sound and the Fury", a documentary all about the conflicts caused by cochlear implants.

Pretend this is a plot, okay?

I absolutely second Poofiemus' "Sound and Fury" recommendation--the cochlear implant controversy has become a bit more muted since the movie came out, but it still continues. Since I'm an implant user, the anti-implant people in "Sound and Fury" made me furious when I saw the movie. It remains a very, very emotional topic among Deaf and hearing-impaired people. My mother did have some trouble with Deaf culture parents when they found out I was going to get an implant.

One of my sisters is deaf. She can't hear anything, and hearing aids don't help at all. She did get a cochlear implant, but she doesn't use it because it's just too much sensory input for her and it overwhelms her. She does have a few disabilities as well, though, which could contribute. We believe she went deaf from a stroke as a baby. She appeared to have been able to hear some when she was a year old, but by the time she was 18 months, she couldn't hear. She went to a deaf school for a bit when she was about 5, but was mostly homeschooled. I've had small amounts of contact with the deaf community, so know a little about the culture, but don't know a ton.

For many of them, being deaf is very much their identity. That's a major reason why cochlear implants have caused such controversy, because some view it as taking away the person's identity to give them the ability to hear. Marlee Matlin was in a movie this year that deals with that, Sweet Nothing in My Ear. http://www.imdb.com/title/tt1158793/

As for having an interpreter around, my sister has always had a friend or family member nearby that knows sign language. People who are learning sign language or already know it are drawn to her, and many people have learned because of her. I'm not really sure how the typical deaf person usually deals with it, though.
Regarding residential schools for the deaf, are there any specific questions you have? The one my sister went to had some people who lived there, and some who rode in every day.

Trying to decide what to write. A WWII-era novel set on the American homefront is the top contender at the moment. That may very well change tomorrow, though.

I'm hard of hearing (deaf family on my mother's side) and I fit all three question and have connections (deaf friends) for the fourth answer. So if you want to know more than the other answers posted above or other soon to be added answers for variety, drop a message. (AIM: Lunae Poeta).

I'm deaf myself and has been for all my life...I'll try and answer your questions as best as I can.

1.) People have already listed the Connexin gene, rubella, German measles, hereditary deafness etc. as possible causes. For myself it was most likely because I was born prematurely, by two months. The hearing mechanism, eyes and lungs tend to be most sensitive to that kind of shock. For me, it was my hearing that failed to develop.

2.) For mainstreaming, it tends to be up to the parents and what they want. My mother specifically wanted me to be put in a deaf school so I wouldn't have to labor in communication, and she hated the fact that in order for me to be mainstreamed, I wouldn't be put in a hearing class, but in a deaf class, kept apart from the other kids. She didn't see the point in that. I don't think that's the case for all mainstreaming programs. Some would do the class for deaf kids only in a hearing school way, and some would put the deaf kid in a hearing class with an interpreter. Now I'm going to go on my friends' experiences here...one was mainstreamed all her life and the other was half and half.
The first was extremely intelligent, but as she acknowledged herself, was weird. It didn't help that she had an identical twin sister who was more beautiful, popular and hearing. It also didn't help that she had a psycho interpreter for years and who blamed the break up of her marriage on my friend. She didn't really have many friends, and she said she found out at one point that the other kids thought her interpreter did all her homework for her!
My other friend...she had a frustrating time with her school system because since she heard enough to be able to talk on the phone, her school refused to give her an interpreter. She had to muddle through her classes the best she could. Now, this was after ADA was passed...she had the right to demand a interpreter and the school had to give one to her or risk being sued. But she and her parents didn't know about ADA, so she ended up just going to the deaf school across town. I think she went back and forth a few times.

3.) Well it depends. Some deaf people are understanding and welcoming, others are arrogant and extremely rude about it, especially if your deaf character never learned sign. Some deaf people who didn't grow up in the deaf community are themselves rude and arrogant about it, as in, why would they need to interact with other deaf people? They can speak, therefore they made it in the hearing world! My hearing brother's hearing girlfriend knows ASL since she's majoring in speech therapy, and one time when she was working as a waitress, she was happy to see a deaf man at one of her tables. He was signing to another person at the table, and when bro's girlfriend went up to the table and signed to him, he put his hands down and absolutely refused to sign back, and instead used his deaf voice to order.
So it depends on what happens when different types of people interact with each other. I've met some very rude deaf people myself, who thinks the world must cater to their every need and who has contempt for the many types of deaf people who exists in the world, and that all deaf people should stay in their own community, isolated from hearing people. But those are like Islamic extremists.
There are also "old money" types of deaf people, people who come from deaf families that have 3, 4, 5 or more generations of deaf members, and are firmly entrenched in deaf culture and the community. I know one of those families. Some are snobbish, others are very friendly.
As for the cochlear implant controversy, like one of the previous posters said it is a very touchy topic, akin to all the hot button topics we have going on today. I think one of the main points of that is...the best time to have a CI put in is when a deaf child is young, when the brain can still adapt easily. The problem is most of these children don't get a say in the process. Add to that the rampant misinformation about what a CI can and can't do, and the fact that CI do become obsolete and can break, plus there's some activities that implanted kids can't do, like undergo a MRI, or even touch a lightning ball. At one point they couldn't play football, but I'm not sure if that's true today. I don't care if other people get CIs, but for myself I don't want it. The only way I'll introduce an mechanical object in my body is if I'll die without it, like a pacemaker, or if I'll suffer unending pain without it, like a knee or hip replacement.

4.) I attended Gallaudet University from 1998 to 2003. Go to Google Earth and enter in "Gallaudet University", there's a very nice image of the campus. It is an enclosed campus, fenced in, and supposedly, the only way in is via the front gate past a security kiosk. To the right of the baseball diamond there are two rows of dorms, and the cafeteria is in between. The main classroom building is to the southwest of that, and the library just beyond. The smart building is right next to the football field. On the other side of the baseball diamonds, there is MSSD, the K to 12 school that is attached to Gallaudet University. There's also an art building to the west (where I spent most of my time!), and the president's house that is next to the entry way, several historic buildings that are on display on the west and south side also, especially the largest one, which was the original part of the school when it opened. I wish the buildings were labeled on Google Earth, so you'll have to muddle through with my attempt at explaining the layout! You can also go to the Gallaudet website and see if they have a map...

Hope all this helps! You can always ask me for more info anytime... :)

My eldest son is deaf- was born hearing impaired and gradually lost the rest of his hearing-he now has about 5% left without his hearing aids. We raised him with TC (total communication). He speaks (although he sounds nasally, no one cares- least of all his friends, family, girlfriend or employer).
He got his current job by answering the "what makes you stand out from everyone else who has applied question" by answering "I can serve Deaf customers and you cannot". He is now teaching his fellow employees basic sign language so that the Deaf adults and children in our community have better service. He also has his learners permit and bugs me all the time to drive the van!! ( so does his little brother)
He has done a lot of "first" in our area- he was the first Deaf cub scout, first Deaf Sea Cadet, first Deaf employee for a few companies- I know it has been tough on him, but he has worked very hard to become who he is and I am very proud of his successes.
He was mainstreamed so that he would not have to be hundreds of miles away at the nearest school for the Deaf. He had an interpreter full time. It was difficult for him at first but he soon showed the hearing portion of the school that he was just Deaf- nothing wrong with his brain. He was published in a world wide magazine at 9 years old ( the name slips my mind at this moment) and received mail stating that he told how others feel and they were thanking him for that.
He has not really been part of a Deaf community although he has Hearing Impaired friends- most Deaf children in our area are sent to the School for the Deaf down south. Those people that are Deaf that he knows sometimes are critical but he likes who he is and HOW he is.

It's a good insanity- honest!

I was a teacher at a residential school for the Deaf for a short while - as far as I saw, people didn't give a whole lot of info on the subject so I'm happy to pop in and do so!

It was a state school from kindergarten up through grade 12 - this meant most of the children lived at the school, though local kids came and went every day. The children had 'house parents,' adults were emplyed specifically to work with them during non-school times - helping with homework, playing, hanging out, cooking, etc.

I found the school uber amazing. The kids learned at a quick rate, mainly because they were taught in their native language. (I won't go into signing/oral controversies here!). They also had speech classes. It had a really warm, positive atmosphere and I think a lot of the kids almost felt like it was an extended family.

Parents were very involved - the school offered signing classes, family events, etc. Altogether a lovely place - a real sense of community. All but three staff members (myself included in the three!) were Deaf as well, so the kids had great role models.

1) What are some reasons someone might be born deaf, or become deaf as an infant? If it helps with the causes, the character has a little residual hearing, but not much.

I was born profoundly deaf due to a rare genetic disorder called Ectodermal Dysplasia. It affects the skin in the ear so the sound isn't conducted the way it should be. There are a LOT of genetic disorders that can cause deafness, some of which have obvious physical trademarks such as very blue eyes and a white streak in the hair. Becoming deaf as an infant could be caused by a genetic quirk that is caused by medication - I would need to get out the exact info. PM me if you want it. Suffice to say that sometimes medication for a sick infant will cause the child to lose his/her hearing.

2) When a deaf child is mainstreamed, how exactly does that work? Do they usually have sign language interpreters all throughout their education? Does it usually have an effect on the child's education? What about social lives? I've heard my sign language teacher's take on it, but I'd like other sides as well.

I was mainstreamed AND attended the local Deaf schools so I can speak on that. I always had sign language interpreters, but that's because it's my mode of communication. There are oral interpreters who I think mouth words to the oral deaf student, and there are cued speech interpreters for deaf kids who use the cued speech (this is more common in the north, along with oralism). Signs are more common in the South.

3) If someone's been deaf all their life, but has never really been a part of the Deaf community, is the community generally understanding and accepting? I know this is a really broad question, and there will always be exceptions to every rule, but I can't find a better way to word it.

Oh HELL no. If someone was raised to communicate primarily orally, and then at a later age starts learning signs and tries to get in the culture, it's very, very hard. Personally I try to be as accomodating as I can because I know it's hard for them. But most Deaf people? Hell no. About as easy to get in as it is to be best friends with the Godfather without doing any "favors" for him...
A side note: deaf is used as a medical view, and by those who don't consider themselves as part of the Deaf culture. Those (like me) who use Deaf, it is a declaration of cultural pride.

4) Anyone who has ever visited or attended Gallaudet University, I'd love to know more about it. My character lives in California and has never visited Gallaudet, but he ends up traveling to DC and visits the Gallaudet campus. What does the campus look like? The buildings? How big is it? What is it like to visit there for the first time?

I've been there, though I turned down the chance to attend the Honors program. It's HUGE. You'd have to visit the campus, I think you can see it online at www.gallaudet.edu maybe.

I'd especially like to learn more details about residential schools for the deaf. This one character didn't go to one, but I haven't worked out all the details about others in the story, and I'd like to have all my bases covered in case some new character crops up or he takes a sudden turn and I have to start a-researching again.

Been to those. Depending on the size and budget for schools, they will be either State School for the Deaf and the Blind (as is the case in Florida), OR be just the State School for the Deaf, then State School for the Blind. They are set up in a similar way to college campuses. Except, there is NO co-eds going on here... and they have some strict staff working in the dorms to keep order and to be "replacement" parents for students. It goes from K to 12, with 2 buildings for elementary, 2 for middle and 2 for high school, one for each sex. Sometimes they'll have an overflow where they have a larger class for one year than they do for the next year so they have to shuffle them around a little. In some schools, especially at FSDB (FL School for the Deaf & the Blind), they have an "apartments" for the seniors to learn how to live on their own. This is an honor, and only for those who have the highest GPAs. Google some deaf schools, and you should find campus maps and get a general idea. I attended Arkansas and Florida, so I know the two schools the best.
There are also special schools for the oral students where they focus more on speech than academia.

Something else in the Deaf world: there are two huge controversies. One is over the cochlear implant, some feel it's a way for the "hearing" people to try and "fix" deafness and thereby destroying the culture. The other view tends (naturally) towards the medical... and there is some truth - there have been cases where doctors have forced parents to sign papers promising not to teach signs. Not always, but sometimes.
The second controversy is signs vs. oralism. If you visit www.alldeaf.com, you will see threads constantly being shut down and moderators threatening to ban members over this one issue. (What I find interesting is, I was raised using BOTH and most people seem not to realize it's perfectly possible and acceptable to use both at the same time...)

Any questions, feel free to PM me. :)

2006 - Immortal Child (22,000) lost
2007 - Que Sera Sera (55,955) WON
2008 -

2006 - Immortal Child (22,000) lost
2007 - Que Sera Sera (55,955) WON
2008 -

This is an awesome thread!

I'm not deaf, so I'm definitely not Deaf, but I've learned some ASL, have had fellow students who were Deaf, and have had hard-of-hearing students (though sadly not any Deaf students yet). I've read many books on Deaf culture, watched videos, and talked to anyone who'll talk to me. The M/C in this year's Nano is Deaf (but was implanted at her parents' wishes fairly young).

A couple of things that I'd like to clarify, that have been touched on but not explicitly stated. These are according to my understanding:

First, part of the implant/no implant controversy is based on an assumption that most hearing people have -- that there is something "wrong" with not being able to hear. Deaf people are proud of their culture and many, MANY see absolutely nothing wrong with not being able to hear (or hear well). While I don't feel entitled to an opinion about the CI issue, I have to admit that I'm so impressed by the Deaf people I've met and I don't feel that it's necessarily an impairment. (By that, I don't mean that Deaf people can necessarily do *every* single thing, but are very resourceful and you'd be surprised at how one can adapt to deal with situations. Being Deaf does *not* mean you're broken.)

Second, the native language of a Deaf person is not English (or French or .... :-) It's ASL (or whatever signed language they were taught). When someone learns a signed language as their first language, all others will be secondary languages -- they're essentially ESL (English as a Second Language) students. When they write or speak in English, it's like one of us trying to get along in French. This came as a complete shock to me when explained by the interpreter I know, but made complete sense.

Deaf people are generally characterized as being quite straightforward, often at odds with what hearing culture considers polite. Very straightforward comments about appearance aren't out of place. Additionally, everyone seems to be "in each other's business." The norm in a group seems to be to share fairly personal details on a routine basis that perhaps a hearing group wouldn't share. If you think about it, I think both of these qualities actually make a great deal of sense. (But they are, of course, generalities.) There's often mistrust between Deaf and hearing people, too. I've been repeatedly told that no hearing person will ever become an "insider" in Deaf culture, not even a CODA (child of Deaf adult).

Oh, and my $.02 to your "how would they be accepted" question -- my understanding is "it depends." I think some would probably welcome, but others would turn up their noses -- "why didn't you join Deaf culture, are you too good for us" type of thing. Just my impression.

--
2009: My Life As A Gay Man (ScriptFrenzy)
2008: Alienation (NaNoWriMo winner)
2008: Born Free (ScriptFrenzy)
2007: Future History (NaNoWriMo winner)

Thank you so much for your input everyone! All these responses are excellent, and they've been a huge help. I especially like getting multiple sides of the different issues.

Any further input would be excellent! If I can think of some more specific questions, I'll be sure to ask, but for now any more thoughts on what you consider important issues (such as the cochlear implant and oralism vs. sign language discussions) would be awesome.

:)

2007 NaNo - Head Case - Winner! 75,004/75,000 words
2008 NaNo - Drifting - in progress - /100,000 words

Also wanted to mention, by a mention in cranberrygirl's post: I think the school she may be referring to is the Alabama Institute for the Deaf and Blind. I'm not sure if they have a website or not, but the main campus is in Talladega, Alabama and serve a large deaf community in the Talladega area. From what I understand from the lady I used to work with that served as a counselor there for years (she has since resigned due to medical issues), there are specific cultural pockets in the overall deaf community that includes slang that does not migrate from community to community in ASL. In that, it is the same as regional dialects in American English.

You might want to nail down your community and then find specifics :-)

Regarding the argument that ASL is the "native" language of deaf children, I would have to respectfully disagree with Padawan. This argument has always made little sense to me because babies don't actually have a choice in what language they learn as their native language--it's dependent on what they learn from the parents. If the parents of a deaf child choose the ASL route, great. If they go the oral route, that's great, too. (and by the way, something like 85-90% of deaf children are born to hearing parents...)

Another argument in favor of ASL and Deaf culture that has always bothered me is the idea that ASL is a beautiful language. I don't deny the truth of this--I have been to plays that were signed, and those were fantastic to watch. However, I'd like to add that spoken language is equally amazing--just think of the sheer variety of sounds a human voice is capable of making. I've always been deeply grateful for my implants allowing me to experience spoken language as much as they have.

Valid questions, all. I'm not deaf, or hard of hearing, so I can't give the first-person perspective, but I've worked in a TTY relay center for the last ... wow, almost six years. If I'm mistaken, that's fine. This is just generalities from what I've seen.

Acceptance in the deaf community seems to have a great deal to do with whether or not you know sign. There's a deaf woman working in social services near where I live who didn't learn sign until later. (I forget if she said high-school age or college.) Her parents felt they were doing the best thing for her teaching her lip reading and speaking English when she was little. As a result, she had to work hard for acceptance, even though she's never heard a sound. Granted, she's only one example.

Gallaudet has a great website, with pictures - http://www.gallaudet.edu/
It's a bit of a hunt for campus pictures, but they're there.

Mainstreaming is very much up to the parents. A friend of mine's brother is deaf, and his parents sent him to a deaf school. They just weren't sure how to mainstream him. This was before ADA was passed, so the public school wouldn't have had to find an interpreter for him. Now, he's very heavy ASL, so if you don't speak it, it's easy to misunderstand the conversation.

As a side note, even with ADA having been passed almost 20 years ago, it amazes me the number of places that DON'T KNOW they're required to provide an interpreter if the deaf customer/client/patient asks. Doctors offices, social workers, etc. I'd say it's surprising how many people think I'm calling to sell them something, but well ... I'd only herd of relay calls once before I started there, so ... it's really not surprising. Then there's the whole TTY/Video relay thing ... I don't know a lot about the video relay, but I know the basics on how it works, and I've got a friend taking a deaf technologies class that I can ask.

Anyway ... good luck! I admit, I'm very interested in how this goes for you.

Yeah, I agree with the ADA thing she spoke of. And even if was twenty years ago, I was mainstreamed for my elementary and middle school and didn't even have an interpreter and didn't even know that I could get one. I went to a deaf high school afterwards, so... Yeah. My mother's side of the family is strongly deaf. My father's side isn't. And he wanted me to be oral, which I still am and am fairly decent at it. I even get remarks from Deaf Studies Major students claiming that they didn't know I was hard of hearing because of that. I managed to convince my father (via sly ways) to get into the high school. I'm now at college, which has a major deaf program there so I can slip between both worlds easily.

I just wanted to take a few minutes to dispel some common misconceptions about cochlear implants--can't help but notice that the cochlear implant/oral people always seem to be a tiny minority in forum threads about deafness. Hopefully this will be useful for anybody who's curious about what implants really entail:

Misconception #1: Brain surgery is involved.

This is something that tends to pop up whenever I explain implants to hearing people. Yes, cochlear implants do require an operation to place the interior part of the device inside the head. But surgeons do not even touch the brain. Rather, they drill through part of the skullbone and cartilage immediately adjacent to the ear's outer lobe--this area of the body does not touch the brain. Since the implant operation requires microsurgery, the amount of drilling/cutting is actually very minimal nowadays compared to the early days of the implant, when they were still more concerned with whether or not the devices would WORK.

Just to clarify, cochlear implants do not directly stimulate the brain. The signals they create inside the cochlea are conveyed via the auditory nerve to the brain, which then interprets the signals as particular sounds. (The brain does have to learn how to interpret the signals first, and some people are more successful than others at this, but more about that later.)

Misconception #2: The implant is still an experimental device.

In my opinion, this statement shares some parallels with the "evolution is only a theory" argument. Just because cochlear implants, like evolution theory, are constantly tweaked and refined doesn't automatically reduce their value as a means of hearing. A little history from Wikipedia: the first implant eventually approved for human use was designed in the 1970s, and implanted in the first human subject in 1978. The FDA approved this device for adult use in the US in 1984. By 1990, implants had been successful enough for the FDA to lower the implantation age from adult to 2 years. During this time, there were people whose earlier-generation implants failed or just didn't work. But there were also many other people who experienced great success with these earlier implants. I have acquaintances who still have working implants that they received in the late 1980s-early 1990s.

In the last few years, bilateral implantation--being implanted in both ears--has really picked up (I myself have bilaterals now). The design of both the exterior and interior parts have been improved to increase their moisture resistance and durability. Now there's even research and studies testing the feasibility of all-internal implants or even implants that conduct sounds through pathways other than the cochlea.

Nowadays, the cochlear implant is rapidly becoming no more experimental than organ transplantation or wearing an artificial limb. Like implants, those procedures don't work for everybody, and work for others to varying degrees. However, their medical value to the people involved as a whole are indisputable.

Corollary to Misperception #2: The implant doesn't work for everybody.

The success of implantation in individuals merits more explanation, since it's a complex topic. There's no estimated success rate for implantation--at least, I've never found one online--because its recipients have widely varying goals and medical histories. Here are just a few of the many, many factors that affect the chances of a successful implantation:

a) How old you are when you get it (it takes longer for adults' brains than children's brains to adjust to a new implant)
b) Whether you relied primarily on ASL (visual info) or the oral method (combo of visual and auditory info) before implantation (This is debatable, but there have been a few studies suggesting that children who rely on ASL have a more difficult time transitioning to implants, which require more oral reinforcement, because ASL children's brains are wired to favor visual info more than auditory info)
c) How willing you are to work hard at "training" your brain to recognize input from the implant--implants are a major commitment, and not one to take lightly.
d) How deformed/damaged your cochlea is (it can affect the number of electrodes the surgeon is able to implant). For instance, people who went deaf from meningitis take longer to implant because the surgeon has to try to fit the electrodes around the calcified parts of the cochlea.

There are more factors besides these, but the bottom line is that each case of implantation is so individualized that it makes it hard to calculate an across-the-board success/failure rate.

Additionally, some people get implants primarily to gain a better comprehension of environmental sounds (a car driving by, a dog barking, etc), whereas other people (like me) go for whole shebang--better comprehension of human speech, as well as environmental sounds. When I chose to get a second implant in my right ear after going for 13 years with only one implant in my left ear, I did so because I wanted to gain a better sense of which direction sounds came from, and to be able to hear sounds from the right side more easily.

The implant could no more take the place of natural hearing than a titanium leg can replace a real leg, but it is still one awesome little computer.

Misconception #3: The implant surgery is dangerous, and leaves people deformed and in pain.

First, let me state: Like every surgery, the implant operation has risks, mainly where anesthesia is concerned. The surgery is much shorter than it was in the early 1990s--my first one was 4-5 hours long, but my most recent was only about 2-2 1/2 hours long. (It's longer if the cochlea is damaged or deformed) As I mentioned earlier, the surgical procedure has gotten smoother, and as a result most patients take less of a beating from the anesthesia than before (for the record, I get rather ill from anesthesia).

Also, like other surgeries, implant recipients do have to contend with swelling, bruising and tenderness for some days after the surgery. For most people, the swelling and pain do go away eventually. It took longer for my head to heal from the most recent implant, probably because I got it as an adult. The implanted side of the head is lumpier to the touch, although I've found that my lumps have smoothed out over time; now I can hardly feel my earlier implant anymore. However, these lumps are not normally visible to other people since they're small enough for hair to cover easily.

One of the more ridiculous variations of the "deformed" claim I've come across is a claim that there is a wire sticking out of the person's head after the surgery. This is not true for any of the three main implant brands (Nucleus, Advanced Bionics or Med-El). I think this arises out of a misunderstanding about the implant's components--a magnet connects the interior and exterior parts, not a wire.

As for pain, some people complain that they get headaches or weird sensations from the implant's stimulation of the cochlea and the auditory nerve. Though neither I nor the other implanted people I know have this issue, I can definitely see how those problems could arise. Some people's bodies just don't tolerate the implant too well. An implant that is programmed on a too-loud sound scale can also cause discomfort. Failing implants, as well, can cause pain. HOwever, as far as I've been able to tell, most implant recipients don't experience these pain problems on a regular basis. Long-term, recurring pain tends to be an exception rather than the rule with cochlear implants. For myself, the skin on my right side (the newest implant) sometimes gets a bit tender and achy when I wear the implant for a really long time. That has become a rarer occurrence over time, though.

I'm going to stop here since I need to catch some z's...

This bit is for beaniegirl...

I'll have to disagree with you a bit on ASL/sign language not being the native language of the deaf. It's not the native language as in that's the only one deaf people can and should learn, but that it's the easiest language for them to learn. Think of it this way, humans gravitate to the easiest way of doing things. The majority of humans are hearing, and they gravitated to a sound-based mode of communication because sound is a primary sensory mode for them. But when the sound-based sensory input is greatly reduced or gone all together, trying to use a sound-based communication mode is like trying to see colors and objects when you're blind or close to blind. Depending on the deaf person, it will range from bearable yet bothersome, to difficult or outright impossible to use a sound-based system of communication. This difficulty is one reason why it took so long to figure out how to educate deaf people. For thousands upon thousands of years, deaf people were seen as mentally retarded because they couldn't communicate and couldn't learn about anything because they couldn't communicate.

But when you make the communication visual, it's much easier, and deaf people automatically gravitate towards that. this is one reason why sign language persisted through the early and middle part of the 20th century, even when deaf kids were isolated away from other deaf kids, had their hands thwacked with rulers, or duct taped to their desk or chair for daring to sign when they were supposed to be oral.

It is just easier to convey ideas through sign language for us. My mother knew this, and it is why she had me go to a deaf school even though I was termed a successful deaf person, I could speak, read lips and take some cues from the sounds around me. She didn't want me to struggle for every minute of each day to understand what was going on around me.

Also, the main reason why so many deaf people write so oddly or like ESL students is because they were not taught properly when they were young. The best thing to do is teach them sign language from when they are babies since it's the language they will grasp most easily and quickly. Then have English follow close behind, starting when they can read, approximately at two years old. Of course they can be exposed to English way before then too. It must be made clear to them that English and ASL for example, are two different languages, with their own rules. Too many people don't do this, which is why deaf people write the the way they sign.

There's also the problem of parents not even communicating with their kids until they go off to school. Many times, the only word these kids know is 'no', 'stop', 'yes', and maybe "eat", 'bathroom', and 'bed.' These are the kids who end up having hyperactivity, rage problems, and other destructive tendencies. Trust me, I know, since I work at a deaf day school myself. So these kids have five years of little to no communication and often little to no rules, since these parents will do whatever it takes to make their deaf kid stop having a tantrum at the store. Five years of very little stimulation to the brain does not bode well for a kid's intelligence or ability to learn languages since it's in the first five years that a child's brain grows the fastest. I've seen so many frustrated deaf kids...they know they're behind by so many grade levels but they can't make their brain learn fast enough or remember things well enough to advance. It's a very sad thing for me to see, since I know that I would have been one of these kids if my parents hadn't made the decisions that they did.

I'm getting off topic here...I'll ask one of my friends to come on here and post about her experiences with living in a dorm. I never did, because my parents wanted a strong relationship with me. Plus I went through a bad time when I was being bullied in middle school, and it would have been like living in hell for me had I lived in a dorm.

On the CI issue...I can't make this post any long than it already is and I have to go to bed...but right now in my town, I know for a fact that many, many parents are being lied to about the capabilities of what a CI can do for their deaf kid. Apparently there are people here that make money off how many kids they can get installed with CIs, whether they qualify for it or not, and it's a good bet that about half of the kids have CIs installed. Most of the kids who go to my school are Hispanic, with Spanish speaking parents. They apparently are being told that if they want to preserve their culture and their language in their kids, the kids must have CIs, and that with the CI, their kid would be as good as hearing. The parents also think that they will get free, perpetual speech therapy and CI repair, when in reality it's only for two years. After that, everything has to be paid for, from maintenance and check up on the CI, to speech therapy which is very expensive. I can't tell you how many kids have CI scars but got rid of their magnets and amplifier packs years ago. I and other staff are forever finding magnets on the football field, and other parts of CIs.

Okay, I'm signing off now, hope any of this actually helped...

There are any number of reasons one might be born deaf, or become deaf early in one's life. I myself am currently mostly deaf - profoundly in my right ear, and severely in my left. I can still hear a bit with my left ear, and have a hearing aid, but it's a toss-up how long it will work for me, as my deafness is progressive: doctors said I would be wholly deaf by 12. I'm not, so haha. :P (It's worth noting that we still don't know exactly why I'm deaf. :P)

I was mainstreamed from kindergarten to 4th grade, after which point I was homeschooled (as were all my hearing sibs). I had hearing aids, plural, during those years, but even so I sat near the front of the classroom and, as I recall, paid close attention when my teachers were talking. I didn't need an interpreter, as I was raised oral, though after I turned 10 or so my parents tried to encourage me to learn to sign. (To this day, I only know the alphabet and a few other signs, because I always felt silly when practicing. However, I do actually *want* to learn it now, though. One of my sisters is willing to look dorky practicing with me, so we'll see how it works out. xD) I can't say it affected my education; I was a voracious child who learned quickly, even if the learning didn't always stick. :P I was also (and still am) a voracious reader; I probably spent more time in the school libraries than on the playgrounds. xD Social life.. I'd guess it about normal for those ages? Certainly I didn't get teased for my deafness, as I recall. I do remember being teased for looking boyish, thanks to a too-large shirt and bobbed haircut. :P

The audiologist I visited last May to get fitted for a new hearing aid was surprised that my hearing is as bad as it is, because I don't speak like I'm deaf. In fact, I often use words that only my mom regularly understands the meaning of without me explaining them or them looking it up in a dictionary. I do have some pronunciation issues, occasionally, but family members are good about correcting me, and I adapt. (The English language is a bugger. Hardly anything is pronounced the way it's spelled, and that's annoying! xD) Of course, this is probably due to the fact that it's only ever quiet in our household when people are sleeping, and sometimes not even then! So there's always something for even my bad hearing to pick up on. :) Being a curious person, I often enquire for clarification of something I didn't quite catch, especially if it seemed to have been funny.

Now, my social life is horrid, but that's as much due to having nowhere to go, really, as anything else. >:D

Can't answer number three, sorry. I'm, er, actually the sort of person you described: a deaf person who's not been part of the Deaf community. :) Have never been to Gallaudet, either. :P

NaNo'04: {Title lost} Fail.
NaNo'06: Dreamspinner - Fail.
NaNo'07: The Hole in the World - Win. :D
Screnzy!08: {untitled} Fail.
NaNo'08: The Silver Stone - Win!
Screnzy!09: TBA

Responding to Destroyer of Worlds here...

Regarding my original comment regarding ASL not automatically being the native language of the deaf, I had in mind the comments I've seen on various websites from militantly anti-implant members of the Deaf Culture that deaf kids have a right to sign language, as if not knowing it will leave a gaping void in the child's life. I completely agree that visual cues are by far the easiest for the deaf to comprehend. After all, I always watch TV with captions, and like most other deaf people, one of my deepest fears is going blind.

Of course, going oral is more challenging for a deaf person in many ways. Before I got the implant and my hearing improved dramatically, I was always frustrated in speech therapy because I had trouble distinguishing the sounds. But there are cons to the ASL route, as well.

The biggest ASL con that worried my hearing parents, while they were deciding which way to go with me, was the well-known pattern that the older one is, the harder it is to learn a new language. Babies pick up a new language much faster than 30-year-olds. Now, if my parents had decided to take the ASL route with me, they certainly would have put as much time and effort as necessary to master ASL as well as they could. Still, it bothered them that I would probably communicate better with friends my own age who would have been equally fluent in ASL as me, than with my own relatives.

Keep in mind that my family had had no deaf people, and knew nothing about Deaf Culture or deafness, period. To many of my relatives, the deaf world to them at that time would have seemed almost like another planet, where a very tight and small group of people "spoke" a language completely different from English, had their own history, had its own culture, and this was also back in a time when deaf kids were still regularly attending specialized schools for the deaf some distance from home.

My parents researched both the ASL and oral routes, and spoke with people from both sides. In the end, they just felt that the oral route would be the best choice, though they were naturally conflicted because they knew it would be a challenge with my depth of hearing loss. To be honest, I have never wished that they had decided differently.

Destroyer, I'm sorry that so many people in your community seem to be having trouble with implants. Since I'm most familiar with the oral deaf world, of course I see a very different attitude towards implants. The implant has had an overwhelmingly positive among the oral deaf and their families--it is an attractive option for hearing parents with deaf children and people who lose their hearing later in life. I've not heard of oral kids throwing their implants aside the way you have among the people you know. My guess would be that these differing reactions are outgrowths of the ASL and oral communities' respective strategies for dealing with deafness.

Well, hanshotfirst, this should be plenty of implant controversy material for you :)

Sorry...just had to add one more thing. It's true that the implant is very expensive, but insurance companies have gotten better about covering it over the years. When I got my first implant in the early '90s, implant surgeons had to fight tooth and nail with the companies to get their approval (the surgery alone costs at least $45,000). But the thing with implants is that they become more cost-efficient over time--at the beginning, there's a huge spike in costs with the surgery, the processors ($6-7,000 each) and the various audiology and therapy costs. Insurance and the implant companies usually shoulder the bulk of this spike, though. Once the surgery is over, and the person has recovered and gotten all the implant parts in place and working, the costs become more spread out after the first year. On average, an implant recipient will have one hearing/programming checkup a year (or once every six months)--this is the sort of thing insurance will cover--and if necessary, regular therapy for improving listening comprehension or speech. (Many babies that are implanted tend to catch up with hearing peers in listening and speech without the same sort of intensive, years-long speech and auditory therapy people like me had.) Implant parts do have to be replaced every so often--I know that when my processors finally get too moisture-logged, it costs $200-$300 to send them to Colorado for cleaning in a special machine, but this happens pretty infrequently, maybe once every other year would be my guess for my processors. As implant companies have improved the device's components, the parts last longer than they used to. Implants also come with rechargeable batteries now, which are much more cost-effective than constantly buying hearing aid batteries. When I still used hearing aid batteries for my implants, I would have to replace them every two days. That is a LOT of batteries to chew up in one year, and a lot of money to pay for them.

Despite all these improvements, lower-income and lower-middle-income families would still find it a challenge to pay for implants. I don't know the numbers, but there may be a point where ASL would be cheaper for a family with less insurance coverage or problems with paying for long-term implant-related things. Anybody know?

XD I definitely learned a LOT from this discussion. I didn't know very much about cochlear implants a week ago, and you did help to give me some perspective on either side of the issue. You also helped me to figure something out for the character's mother, so double thanks!

And I'll admit, I did use some things from this thread to help me write a paper for one of my classes, so thanks to everyone for that too. ;D

2007 NaNo - Head Case - Winner! 75,004/75,000 words
2008 NaNo - Drifting - in progress - /100,000 words

May I just say "Quote for truth"? :D

My hearing used to be decent enough that I didn't precisely *need* captions - I could get by with having the volume fairly loud, and cupping my hand behind my good ear - but they helped. And then my hearing got worse, and there's only so high that I, as a deaf person, can put the volume on something before the non-deaf family members would say "Is that LOUD enough?" or "Turn that down!" or similar. So, captions. (Which does bugger all for listening to music with lyrics, but oh well. That's what lyric sites are for! >:D)

And now I've got a hearing aid again, it's worth noting that it's certainly not a cure-all. Our DVD remote is currently lost, so we can't put the captions on 'em, which annoys me to no end because otherwise I catch maybe one word in ten - and that's if the volume's decently loud and the cast isn't constantly speaking in quiet tones. (Do any of you ever get annoyed by captions that don't match the actual dialogue? I cannot begin to say how much this BUGS ME.) Also in actually speaking to people, I pretty much need the facial cues they make, so I lip-read while I listen; this synchs everything up more or less right. (I still mishear things... a source of some amusement, especially when I repeat what I *thought* I heard and it's.. almost but not quite entirely not what was said. The chances of this happening increase with A) my distance from the speaker, B) people with low/quiet voices, and C) when I'm not actually looking at the speaker. xD) Ambient noise can also play a lot of havoc with what I can or cannot catch. :P

Personally, I think it would be really neat to learn Braille. (I wouldn't want to go blind, though.) Buuutttt this may be because I'm a language nut, and I do tend to pick up phrases, accents, grammar rules, pronunciation, etc., without overmuch difficulty. An odd quirk for a deaf person, no? :P

NaNo'04: Fail.
NaNo'06: Fail.
NaNo'07: Win. :D
Screnzy!08: Fail.
NaNo'08: Being planned.... >:D

I grok insanity! Do you?

NaNo'04: {Title lost} Fail.
NaNo'06: Dreamspinner - Fail.
NaNo'07: The Hole in the World - Win. :D
Screnzy!08: {untitled} Fail.
NaNo'08: The Silver Stone - Win!
Screnzy!09: TBA

:D You've hit the nail on the head with out-of-sync captioning, Inoru. Now that I have implants in both ears, my sound quality has improved enough that I can follow uncaptioned TV and movies pretty well. This also means I'm more easily distracted if I try to watch, say, the news with captions and sound on. I often find myself turning down the sound during news shows so the botched captioning doesn't drive me nuts. (For people less familiar with captioning--news shows use live captioning, which means the captions are typed in as the anchors speak. Captioning for movies and other kinds of TV shows are usually recorded before the material goes up on TV, and thus match up with the sound much better.)

The worst is when the captioning starts looking like this on the news:

JENNY: Our correspondent Pete Jones is@@@eeei
XO&eeeeeeeeeeeeeeeeeeeeeeA
PETETE: HI Penny___Pete: Hi Penny, behind me@@pqi21s
fiery car wreckiiiiiiiiiPo

I can't really do justice to news captioning--when they get flubbed, they're usually much less coherent than the example I gave. Also, sometimes the TV is the problem rather than the captioners themselves. My parents recently got these new digital TVS, and one of them has trouble showing the lower-case "s" in captions. So, instead of seeing the captions read, "I see Spot, I see Jane," they would read "I qee Qpot, I qee Jane." I've gotten used to mentally substituting "s" for "q" while watching that TV :D

Sometimes captioning flubs on the news can be downright hilarious. I saw this flub while watching an ESPN report on baseball games: "The Cubs got raped out." (rained out)

A friend of mine told me this story: she was watching the news with captions, and they were running a spot showing kids playing on the beach. The anchor said, "These adorable children are enjoying a last round of summer fun." But the captions read: "These adorable children are enjoying a last summer ****."

LOL Obviously I miss out on a lot of potential humor, since we only use our TV for watching movies on DVD or video. And even then, the captions/subtitles sometimes skip whole sentences or some words or... and if the volume is high enough, I'll hear the discrepancy - or if the camera's at an angle to show the speaker's face, I'll lip-read it. Though not always accurately. And it annoys me, because who knows if I'm missing something plot relevant?! xDD

Additionally, I feel (for some reason) that I should mention that I don't generally get distracted re sound+captions. I can read the captioning so quickly I can still lip-read it as the people say it, or don't miss any action at all. xD It amazes some of my hearing friends when I mention it. (I'd have to say that my sibs probably read them pretty quickly, too, if they actually pay any attention to them. *shrug*)

NaNo'04: {Title lost} Fail.
NaNo'06: Dreamspinner - Fail.
NaNo'07: The Hole in the World - Win. :D
Screnzy!08: {untitled} Fail.
NaNo'08: The Silver Stone - Win!
Screnzy!09: TBA

My girlfriend lost her hearing entirely when she was about 3 1/2 years old. She had spinal meningitis, and the high fever that nearly killed her fried the nerves that register and interpret sound. 100% hearing loss in one ear, and 96% (or thereabouts) in the other. She learned to read before she lost her hearing, so she never had quite the speech or literacy problems that people who are born deaf end up having. As a result, she was "too hearing" for the deaf culture to accept her, but too deaf to get by in the hearing world.

Her teachers would tape her hands together to keep her from using sign, because they wanted to fully integrate her into the hearing world (you know, as if she tried really really hard, she might start hearing spontaneously!). The one month she went to a deaf school, she was so far and away more intelligent and literate than the other students because she was born hearing that they went out of their way to torment her. To the point that she dropped about six pant sizes in one month and threatened her mother that she would walk home if her mother didn't come get her that weekned.

The school was about 20 miles away from her home.

(She was born in the early 70s, and went to school in the early 80s, if that gives you an idea of how the school systems were different from how they are now.)

That's the most I know of the deaf culture, besides the fact that they think it's a bad thing to prevent future deafness, which doesn't help change my opinion of the whole mess after hearing about how they treated my girlfriend.

Actually, I was 4 1/2, and that particular school was more than 20 miles - it was 2 hours away, 100 miles. (But to be fair, I've attended other schools that were 20 miles away from my home, just not that particular one.)

But other than that, everything my girlfriend said is quite accurate. I don't have a high opinion of other deaf people because of the "culture".

If you're extremely literate and can speak clearly enough to be easily understood by a hearing person, and have a lot of hearing social contacts, it doesn't matter how deaf you are. You're "too hearing" for them.

On the flip side, if you're profoundly deaf, you're too deaf for the hearing world.

I experienced far more viciousness and clique harassment in school from deaf students than I ever did from hearing students for no other reason than I could read and speak better. That's what created my disdain for "deaf culture".

At Indiana School for the Deaf, when I went there for 1 month in 8th grade, I was the first new student in the "A" group in three years. There were... seven to nine other students, I can't recall exactly, but it was less than 10. I was new, I knew minimal sign because Ft. Wayne Community Schools discouraged it, and I could read, write, and speak better than any of them.

I had personal property destroyed, stolen, "misplaced", homework ruined, I was shoved, tripped, and bullied on a daily basis.

And naturally, not a single teacher could be bothered to try to intervene, which is par for the course with teachers in general. The only one who did was the math teacher, and that was her first year there, so she had no authority in their eyes, and they were just mildly less cruel to her than they were to me. (That's the only time in all my school years I actually enjoyed math, because it was 50 minutes out of the day when I didn't feel completely alone.)

"There is a technical term for those who mistake the opinions and beliefs of characters in a novel for those of the author. The term is 'idiot.'"
-- S.M. Sterling

Okay, I have a question or two that might sound stupid (though I hope not) about the technology. Preferably videophone, but TTYs would help too.

So, if you're calling someone with a videophone and you don't have one, I know you would use a relay service. Which means you would call the relay service, right? I mean, it doesn't automatically connect through a relay service, does it? It sounds really stupid, I'm just wondering if, say, a telemarketer called someone who primarily uses a videophone or TTY and called the house directly. So... what exactly would happen?

2007 NaNo - Head Case - Winner! 75,004/75,000 words
2008 NaNo - Drifting - in progress - /100,000 words

To clarify, I said that the native languge of a Deaf person is ASL (with a capital D, not a lowercase d). By definition (unless you're late-deafened and were able to pick up speech), I would say that for most American Deaf people the first language that's acquired is ASL -- that's why I say it's "native." At any rate, this is the opinion of a long-time interpreter which I'm bringing to light here. :-)

If we were speaking of "deaf" children, I would agree with beaniegirl. They have no choice.

--
2009: My Life As A Gay Man (ScriptFrenzy)
2008: Alienation (NaNoWriMo winner)
2008: Born Free (ScriptFrenzy)
2007: Future History (NaNoWriMo winner)

This is an extremely educational thread, and I've learned a heckuva lot reading it. Thanks to all that posted so far.

I have a quick question: are there any traumatic injuries an adult could suffer that would cause hearing loss and make them a candidate for cochlear implants? I'm thinking more like a result of a car crash or explosion, not the result of disease or genetic mutation.

Thanks.