ANA Discussion Forum
AN Community => AN Community => Topic started by: ppearl214 on April 18, 2008, 02:44:56 pm
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figured I'd share this with you all after I read it... there is a wonderful quote that Marlee Maitlan notes in the article below, based on her character's conversation with her husband about their pursuit (or not) of cochlear implant for their son..... will "bold" it... but, if any of you watch this, would love your thoughts on it ....
http://www.cnn.com/2008/SHOWBIZ/TV/04/18/apontv.sweetnothing.ap/index.html
full article below....
Phyl
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LOS ANGELES, California (AP) -- Hunched at the bottom of a staircase on a bustling movie set, Jeff Daniels practices his second voice.
His hands speak loudly as he rehearses sign language for "Sweet Nothing in My Ear," a Hallmark Hall of Fame telefilm about a married couple torn apart when their young son loses his ability to hear.
"Every finger has to be in the right place," says Daniels, who co-stars with Marlee Matlin in the movie, which premieres Sunday (9 p.m. EDT) on CBS. Daniels, who had never signed before, simultaneously speaks and signs his dialogue throughout the film.
In a series of heated scenes, Daniels' fingers fly as his character, Dan Miller, who is hearing, and his wife, Laura (Matlin), who is deaf, clash over whether young Adam (Noah Valencia) should undergo cochlear implant surgery. Dan presses for the procedure, which involves placing an electronic device in the inner ear, while Laura adamantly rejects it.
The couple's conflict reflects the real-life controversy over cochlear implants, considered a rejection of deaf culture by some members of the deaf community. But for director Joseph Sargent, "Sweet Nothing" is as much about a fractured family as it is about cochlear implants.
"What's going to happen between these two people who love each other?" says Sargent, who directed "Love Is Never Silent," Hallmark's Emmy-winning 1985 TV movie about a deaf couple and their hearing daughter. "How are these people going to resolve hanging on to that beautiful little boy and to each other?"
Relaxing between scenes, Daniels, 53, praises the evenhandedness of the script, written by Stephen Sachs and based on his play of the same name. "On my character's end, why wouldn't you do the very best you could for your kid?" he says. "What if he could hear again?"
"But my wife's answer is, 'So what you're saying is, he's not normal, he needs to be fixed. So am I not normal? Do I need to be fixed?' There's a whole deaf culture that wants to be considered normal -- and they are," says Daniels, whose movie credits include "Terms of Endearment," "Good Night, and Good Luck" and "Dumb & Dumber."
A crew of sign language interpreters were on the set to assist Matlin and the company's other deaf actors, including Valencia, and Ed Waterstreet and Phyllis Frelich, who play Laura's parents.
An interpreter also assisted production consultant Linda Bove, who is deaf herself, communicate with the cast and crew. One of Bove's responsibilities was to make sure the actors' hands didn't drop out of sight of the camera while they signed during scenes. She also coached Daniels as he immersed himself in sign language for a few weeks before and during production.
At home in Michigan, Daniels reviewed online video clips of Bove signing his dialogue while an interpreter voiced them. Then he worked with Bove one-on-one for a few days in California before rehearsals started.
"When I read the script I said, 'I could blow this, I could just completely fail miserably,' " he says. "You've got these emotional scenes and yet it's like you're also juggling three peaches."
In one scene, Daniels talks as he carries a cardboard box into the Millers' house. During rehearsal, he carried the box into the house, then realized he needed both hands to sign his dialogue.
"Jeff's face went ashen white," Sargent says. Everything stopped while Daniels and Bove worked out a one-handed signing protocol. Such rethinking of staging and props was routine on the set, he says.
"Sweet Nothing" also challenged Matlin, who had never played a character who signed solely in American Sign Language, which has a different syntax than spoken or signed English.
Although Matlin, an Oscar winner for 1986's "Children of a Lesser God," routinely lip-reads, speaks and uses a hearing aid, she does none of these in "Sweet Nothing" because they don't suit her character, she says.
Rather, the 42-year-old actress signs silently in the film while an unseen actor voices her dialogue. Other deaf characters are "voiced" in similar fashion.
"I'm constantly making sure with Linda, 'Is this right, does this look good' because I want it to be authentic," Matlin says. "I'll have a very tough crowd watching me."
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Phyl -
this is a very interesting dilemma. If it were my personal situation, I don't know how I would feel or what choice I'd want for my child.
I didn't lose my hearing completely until my AN surgery last year, but one of my first discussions with my doc (as soon as I was coherent enough) pertained to what my choices were so I could hear again.
Although I know that the BAHA won't be the same as having my hearing back, I can't imagine just living my life with SSD. But I do realize that this in my personal choice and that it's not everyone else's.
I don't know if I'd feel differently if I were born deaf. I'm sure that my world and how I interact with it would be completely different from what I know now, but if it was the only world I knew it probably wouldn't be so bad.
I guess I'm on the fence with this one. I'm very interested to see what others think.
Jan
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My sister is a sign language interpreter in Seattle, and has been for many years. The deaf culture is very strong, especially in that city, and they make an important point: deaf people are people first, and deaf second. It is entirely right for society to recognize and include the deaf in everything, just as we do for blonds, or lefties, or big and tall, etc.
I think it really comes down to how effective a cochlear implant is. If it has a reasonable chance of restoring reasonable hearing, that would be one thing. But if, as I suspect, it produces a poor semblance of hearing, then it is a different story. It then sends the message that anything is better than being deaf, and that is the message that the deaf community objects to so strongly. Teaching deaf children to speak poorly, for instance, is not better than teaching them to sign well. Being a poor listener is not as good as being a good signer. Many deaf people attain an impressive level of functionality in our society; the deaf culture really does work.
Here I am with my three week old hearing aid; am I being hypocritical? I don't think so, because the hearing aid restores my left ear to an excellent level of hearing. If that is what young Adam needed, I think Laura (and the community she represents) would be enthusiastic and supportive. What they object to is desperate measures in the face of deafness, instead of accepting it when it occurs, and joining the world of deaf culture.
Steve
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I think Jan, knowingly or not, hit upon the exact point of the movie; the fact that deaf people and non-deaf people come at the subject of the implants from two different sides. Those that have been deaf all of their lives know only a world without sound while hearing people, obviously, know the world with sound. Both consider their world "normal" because it's all they've known. With that said, it stands to reason that a hearing person would want to give their world to their child as would a deaf parent. It sounds like an interesting movie because of that dynamic and how the couple ultimately decides to resolve that issue for the benefit of not only their child, but their relationship.
I love movies and tv shows that explore social dynamics and struggles. Survivor and Big Brother (no snickering!) are two shows that have really nailed the group social dynamic space on tv. In survivor, a group of total strangers are thrown onto a remote island with precious nothing to survive with and are competing for a large sum of money. It's interesting, to me at least, to see the social dynamics that emerge and playout during the season.
If for no other reason, I'd like to see this movie to see the social dynamic of one deaf parent and one hearing parent. The quote by Matlin is priceless. It really strikes to the heart of the dynamic between the two "sides" about what is considered "normal". What's more is that both sides are "right". That makes for an epic battle of right vs wrong, good vs bad, etc.. Has anyone else been watching Dancing With The Stars this season? Matlin is on the show (if she's already been voted off, don't spoil it for me because I'm still a few weeks behind!). It's interesting that she's doing this show, dancing (quite well I might add) while not being able to hear the music. It's also interesting to watch her dance because of the non-verbal queues that her partner works into their dance to keep her on the beat, going the right way, etc.. It's been really facinating!
Thanks for posting it, Phyl. :D
Brian
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great conversation folks. Now, I know Hollywood is going to do their "thang" to it for dramatic purposes but the underlying message.... has certainly piqued my interest. Since the BoSox are playing early in the day, I'm going to try to catch the movie to see their take on it....... I thought it was good subject matter and wanted to share with you all.... thanks for sharing your thoughts/feelings on it.
Phyl
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I'll definitely watch the movie or record it and watch it at a later date because it sounds well-done, with a thoughtful script and talented actors (I've always been a fan of Marlee Matlin). However, I'm going to be the contrarian here and take the position that being the parent of a hearing child that becomes deaf and not trying to do whatever is possible to help him regain at least some level of hearing is...for the already-deaf parent...somewhat selfish and certainly not in the best interests of the child.
We are created as human beings with the intent of being able to hear. Hearing is a vital function, even though human ingenuity has made deafness much less of an impediment to living a 'normal' life. Marlee Matlin is an excellent example of that kind of human spirit that rises above physical obstacles. She has enjoyed a robust acting career, is married (to a hearing husband) and has four children. Her performances on 'Dancing With The Stars' are nothing short of remarkable, considering the fact that she cannot hear the music that she is dancing to. I admire this woman and salute her accomplishments, all achieved without the benefit of usable hearing. I realize there is a long-term and successful movement in the deaf community that contends deafness shouldn't be treated as a handicap or the deaf in any way treated as inferior and I concur with that position. However, because we, as human beings, are hearing beings, the absence of the ability to hear is definitely a handicap in an otherwise hearing world, as most of us with SSD can readily testify.
Of course we shouldn't ostracize or otherwise deny the deaf their full rights and try to accommodate their situation in any way possible. Fortunately, we have laws that make that mandatory, although, as we all know, we cannot always control the actions and words of ignorant, rude people. However, the reality remains that deafness is not 'normal', no more than blindness is normal or the inability to walk, etc. Pretending that a profoundly deaf person is not handicapped to some extent is shallow thinking. I can understand why the 'deaf community' attempt to present deafness as 'normal' (for a deaf person) - but it isn't. Blind people don't pretend that blindness is normal, even though some notable blind people have made great contributions to our society over the years. Were my child to be stricken with blindness, if it were feasible, I would want him to receive a corneal transplant to regain his sight. I know a lady who was born with spinal bifida and has never walked. While her condition is 'normal' for her, as it's all she's ever known, I suspect that she would abandon her motorized wheelchair in an instant were she given the opportunity to walk. This 'deaf community' that seems to fear admitting deafness is not perfectly normal and opposes a deaf person - especially a child - receiving a cochlear implant because it 'rejects his deafness' seems rather perverse. If an adult who is deaf wishes to embrace their deafness, that is their right. While I wouldn't make that same decision for myself, were I totally deaf, I would not try to stop or dissuade a deaf person from refusing a cochlear implant if that was their choice. However, if it is a child in question and that child has had hearing and lost it for whatever reason, that is a different story. Then, I would certainly take 'Dan Miller's" (Jeff Daniels) side and insist on a cochlear implant for the child, if possible. I think Marlee Matlin's character (Laura Miller) is being somewhat selfish in this instance and condeming her child to a silent existence because she doesn't want to feel like an 'outsider' to her own child. A fear which is likely unfounded. Your mom is always your mom and we all love our mothers no matter what.
Deafness is not like gender, race or even sexual identity. It is an affliction. To make it a PC-protected condition that is respected is one thing and we can probably all agree on that. But, in the situation presented in the TV movie 'Sweet Nothing In My Ear" , to deny a deaf child the opportunity to hear again because he is now considered (by his deaf mother) a part of the 'deaf community', as if he were gay, a racial minority or otherwise socially disenfranchised by virtue of his affliction, is simply perverse and I cannot agree with the premise. The boy has gone deaf. He didn't choose this and it can be helped with medical technology. Why not do it?
I'll watch the movie to see how this hypothetical but probably real-life-for-some dilemma is resolved by the writer. I will be disappointed if the child in question is denied the opportunity to hear, simply because his deaf mother feels threatened by that, which seems to be the underlying motivation for her opposition to the boy receiving a cochlear implant. I admire Marlee Matlin as an actress and a very able person who has surmounted a serious physical obstacle in her life, but I won't be on her side while watching this movie and I sincerely hope that she wouldn't take this position in real life, especially if were her child in question.
Of course, this is just a personal opinion and not an issue I wish to debate to any great extent. Life is too short. :)
Jim
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Great perspectives everyone. I'm on the fence, but in this story I would lean towards restoring a child to whatever he was. If he was born deaf, and I was his deaf mother, I would leave it. If the little boy was older and accustomed to the world of the hearing, I would do all in my power to restore hearing. If the child was older still, I would let him make his own choice.
Yvette
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Thanks Brian for summing up what I was trying to say; you said it much better than I did :)
It's interesting to read all these different opinions.
I forgot to say in my prior post that when I found out I was SSD, being only 45 years old, it never occurred to me that I should just stay that way. I figured if there was something my doc could do to help me hear again, that there was no question of me pursuing it. In my mind, it was a given.
I don't know if I'll catch the movie - don't watch TV very much or very often - so I may have to hear from you guys what decision the parents made. Wonder if anyone asks the child his opinion ??? He is a child (I don't know what age) but IMO he should be able to weigh in on this - afterall, it's his life.
Jan
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Wonder if anyone asks the child his opinion ??? He is a child (I don't know what age) but IMO he should be able to weigh in on this - afterall, it's his life.
Hey Jan, does that remind you of a book we read recently? ;)
Does anyone have an idea how good a cochlear implant might be in a situation like this? Would Adam regain good speech recognition, for instance?
Along with a decision to do the implant itself, there is an implied decision to pursue a hearing person's approach to things like speaking, listening, education, and social interaction. That is where Laura and the deaf community might argue that Adam would be better off as a deaf person. There are many deaf people who have tales of woe from childhoods spent struggling to try and act like a hearing person, getting punished for signing, and the like. If a person really can't hear normal conversation, or hear themselves speak, it makes sense to adopt the very effective system of sign language and the rest of the deaf culture. The deaf person will be happier that way.
Steve
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Hey Jan, does that remind you of a book we read recently? ;)
Why, yes, Steve it does. Funny you should mention that :)
BTW, are you going to join us in our "elephant book" discussion. I think we're starting around May 1st, since I haven't even cracked the book yet ::)
Hope to see you there,
Jan
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O.K. I just watched the Hallmark Hall of fame presentation of 'Sweet Nothing In My Ear'. It was excellent, as I expected, and also, as I expected, Jeff Daniel's character pretty much said everything I would have said. I felt as if I could have written the script...at least for his character. I reject the premise that deafness is akin to being a racial minority and has it's own 'culture' so that anyone advocating a cochlear implant for a deaf child is somehow insulting deaf people and telling them they are 'inferior'. In my opinion, that is nonsense. A deaf person has been deprived of an important physical sense. They are not 'inferior', but they are handicapped, whether they wish to admit it, or not. As a person with SSD, I consider myself handicapped. Mildly so in comparison to a totally deaf person but still, somewhat handicapped. To simply admit I don't have fully functional hearing and this is somewhat limiting is not minimizing my value as a human being.
I was disappointed by the somewhat muddled ending (the issue of the child in question receiving a cochlear implant) so that we could have a tacked-on sentimental ending where the heretofore battling parents could get together as 'best friends' and would simply accept whatever a judge in a custody hearing decided (if mom gets custody - no implant. If dad gets custody - implant). I felt this was a too-cute way to avoid any judgments and allow each 'side' to be right in their own eyes. However, I'm no film critic and I'm sure most people enjoyed the movie. I did too. I simply disagree with the attempt to make deafness a PC issue, which I feel is ridiculous. Well, it was only a movie and hardly worth getting too agitated about. As I often say: life is too short. :)
Jim
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I made it a point to watch the movie tonight, but I'm still trying to sort out my opinion of it.
A lot of good points were brought up on both sides of the argument. And I think they did a good job of showing both parent's perspectives and why they felt they way they did. However, I felt a little "cheated" because no real decision was made. We were lead to believe we knew the parents' ultimate choice, but we were also left to believe that maybe over time that choice would change.
I am interested to read the article in the Hallmark magazine that they referred to at the end of the movie; I'll have to pick it up.
Jan
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Caught it as well... I have to agree about the initial debate of whether a parent should make a decision for a minor aged child to do a procedure like that or not..... and in Jeff Daniel's character's case... for his own selfish reason... but, I understood his character's point of a parent doing all they can to help their child with life..... yet, the mom's point of accepting what is.... and learning to deal with it from there, while still being a viable member to the community.
As I sat there watching it, it brought thoughts of debates here about "should I get a BAHA?", "should I get a Transear?", "how do I deal with SSD when I had some hearing before my treatment?", etc........ thus, my reason for posting this here. We discuss so many times about trying to support others that lose their hearing from this "journey" we endure and even as the movie noted (the judge in the end) about how much it's a highly-personal choice and her focus was the kid's parental custody, not whether he should have a cochlear implant or not........ my question is... now, not being a parent.... how do you make that kind of choice for a child?
In the end, I thought of folks here that I have met or spoken to or have seen post..... how do you adjust to what this AN journey has brought to each of us? Do you take the option, if available, to attempt in obtaining some sort of hearing abilities or..... do you just "deal" with it and make the best of it? A highly personal question.......
Jan, I'd be interested in the article as well... and noted the 2 DVD's getting ready to go on sale as well, also dealing with family combined issues of having hearing impared in a "hearing" family......
Overall, thought the movie was good from a parent's standpoint in trying to do what is best for a child.... but, like Jim and Jan noted.... the ending fell flat.
Phyl
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Caught it as well... I have to agree about the initial debate of whether a parent should make a decision for a minor aged child to do a procedure like that or not..... and in Jeff Daniel's character's case... for his own selfish reason... but, I understood his character's point of a parent doing all they can to help their child with life..... yet, the mom's point of accepting what is.... and learning to deal with it from there, while still being a viable member to the community.
Accepting one's deafness is fine, albeit somewhat limiting, if that is an adult decision. 'Accepting' deafness for your child is another story. Would a mother 'accept' autism or some other affliction for her child? I think not. I noticed that the movie avoided having either parent ask the child how he felt about remaining deaf or having limited but functional hearing. As the child's father, my position would be that I would give the child the opportunity to have hearing via the cochlear implant and if, at 18 or so, since he would still be deaf, if he chose to not use the implant (to hear), that would be then be his decision..
As I sat there watching it, it brought thoughts of debates here about "should I get a BAHA?", "should I get a Transear?", "how do I deal with SSD when I had some hearing before my treatment?", etc........ thus, my reason for posting this here. We discuss so many times about trying to support others that lose their hearing from this "journey" we endure and even as the movie noted (the judge in the end) about how much it's a highly-personal choice and her focus was the kid's parental custody, not whether he should have a cochlear implant or not........ my question is... now, not being a parent.... how do you make that kind of choice for a child?
In the end, I thought of folks here that I have met or spoken to or have seen post..... how do you adjust to what this AN journey has brought to each of us? Do you take the option, if available, to attempt in obtaining some sort of hearing abilities or..... do you just "deal" with it and make the best of it? A highly personal question......
I had excellent hearing in both ears before my AN destroyed the hearing nerve in one ear, leaving me with SSD. I have chosen to 'deal with it' (fairly successfully) and not obtain a BAHA or TransEar device. I'm also an adult. Whether anyone supports my decision or not, it is mine to make...and live with, for better or worse. This highlights the difference between making an adult decision and making such a decision for your child. I'm a parent and I can tell you that making such a life-changing decision for a minor child is quite difficult but sometimes necessary. This is why I would give my deaf child the option, when he or she became an adult, to stay with the cochlear implant with it's benefits and limitations or choose to remain totally deaf at all times and live in that so-called 'community'.
I did learn a few things from the movie. I found it rather interesting that the 'deaf community' differentiates between those born deaf and those who lost their ability to hear at a later date, as if this made them second-class deaf citizens. How absurd...and petty... is that? I also learned about the limited future earning power for the majority of deaf people, which is disheartening but not shocking. I also learned that many deaf Americans receive government disability payments - yet the spokespeople for the 'deaf community' insist deafness isn't a disability. Of course I don't begrudge the deaf from receiving government (taxpayer) funded financial assistance as their earning poweris limited and our government can find the tax money to fund many things that are less worthy. However, if deafness isn't a disability (a premise I reject) than why accept government money based solely on one supposedly having a disability? This bit of hypocrisy simply adds to my contention that, in the movie scenario, the father was right, even if he was being 'selfish' for wanting his boy to be able to hear again (after losing his hearing at age 3) and the deaf mother was equally 'selfish' for wanting to keep her son deaf at all times so she could relate to him and keep him in her deaf 'community'. If one has to plead guilty to being 'selfish'(in their motivation) then I would side with the father and his desire to allow his deaf son the opportunity to hear again, even if imperfectly and in a limited fashion.
Jan, I'd be interested in the article as well... and noted the 2 DVD's getting ready to go on sale as well, also dealing with family combined issues of having hearing impared in a "hearing" family......
Overall, thought the movie was good from a parent's standpoint in trying to do what is best for a child.... but, like Jim and Jan noted.... the ending fell flat.
Yes, it did. The PC plague struck again. The scripwriter(s) wimped out on arriving at a real conclusion so that you can take either parents 'side' and, at least in your own mind, not be 'wrong'. In that case, I was right. Dad gets custody and Adam (his deaf son) receives the cochlear implant and can hear - and learn to speak - again. Mom pouts but she and her now-divorced husband remain 'best friends'. Violins play and we fade to black - as does my interest in further commenting on this movie.
Jim
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thanks Jim! :) Very insightful as always! :) Great post.....
I watched my folks agonize over a life-altering decision for one of my sisters for when she was 12 yrs old. She would not have had the capacity to try to understand the situation... and in their case, they had to jointly make the best decision they could for her at the time. In the movie, they noted the son had lost his hearing at a young age (and possibly.... did not remember what it was to "hear"). I'm in line to think that it should be the son's decision but for when he is older to understand all that it involves (ie: benefits, risks, etc) and with his folks love and guidance, then make the decision.
My folks did they best the could in my sister's situation....... if they had chosen one option offered... or, as they did, they "accepted" what was the situation.... I knew they had my sister's best interest at heart, as she wouldn't have fully understood at that age. Regardless of the outcome, they "accepted"... we all learned to accept .. and made the best of it as best as we could.
Again, as you noted... all personal decisions....
Phyl
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Power was going on and off and missed the movie ...fried my phone , but thankfully
not the computer
I read an article in Wondertime Magazine when I was at school copying stuff...I have to go
back tomorrow and will lift the magazine from the workroom... just leave some of mine in it's place :)
I looked on Wondertime website and couldn't find the article
It was written by a woman that has two daughters on partially deaf and the other totally deaf...
the younger has cochlear implants on both sides and at 4 or 5 will take them out when she
wants to not hear ... for them it has over all been a good experience
We have a little boy at school that has only part of a brain... one side of his skull is flattened and a
good 2 inches in from other side... he is totally deaf on one side as there are none of the inside
parts of the ear... and little hearing in the other side... his hand movements are jerky and often
flailing about ...so teaching him to sign has been a total failure... he has an implant and although
only makes grunts and no real words it is easier to communicate with him and for him with the implant...
when he first got it he would jerk it off his head , moan and cry when ever it was put on him...
that was in October...
now he will tolerate it longer... when classes change you have to take it off as the noise of kids going to
next class are too much for him...he loves to be outside and if you say DJ , Door he smiles and tries
to get out of his wheel chair to get to the door... complete sentences confuse him still but DJ Door
and a happy kid are alot better than the unhappy child we had back in the fall that hit himself and bit himself and
cried most of the time... he is in special classes except for recess and music... and has PT three days a week...
before the implant he refused to try to walk and got mad and tried to hit and bite... with it and learning
simple one or two word phrases he is a different child... he is walking 6-8 steps at a time and can get back
up with someone holding his hand
I know his other problems dwarf the deafness... he was sent home to die after birth... the plan was to just
feed him and do no extraordinary things to keep him alive... today he still only takes liquids through a bottle
as he can't manage solids ... but the ability to hear has made such a vast improvement in his life it
is almost unbelieveable... a learn to deal with it attitude , which til he was 6 is what was being done ,didn't
work for him...and now his parents are regretting not doing it sooner ... he won't ever be fully dependent but
he is no longer trapped in a silent world... he loves music and claps and stomps with the beat ... and he
laughs which he didn't do before
My youngest has a lymphatic malformation to the right side of her mouth... it is an over growth of lymphatic
tissue that protrudes into her mouth and makes her look like she has been popped in the mouth all the time ... she
had surgery at 3 and at 5 and at 5-1/2 and at 6-1/2 to remove tissue... the excess was getting bit and infected and
making brushing teeth on that side impossible... she is getting a bit puffy again and will go for evaluation in June ...
people have said we should not put her through it since it is unlikely to kill her... if it starts growing down neck it can
interfere with breathing or swallowing so mainly was done for cosmetics... when she was in kindergarten another child
held her down and pried her mouth open to see why her mouth was like it was and she came home black and blue
and bleeding ... he told her she was stupid and ugly because of her mouth ... if a kindergärtner does this , what would
happen as she got older... kid can be cruel... I forget about it and someone will say to her What happened to your face ?
and I will look to see what happened only to see what to me is my child's normal face...
she was already scheduled for surgery about 3 weeks later ...I marched to school the next morning talked to the
guidance counselor , principal and teacher ... without singling out the child as the bad guy we all talked about people
that were different... then the teacher explained that Sarah had a problem that made her mouth a little fat and was
going to have surgery soon and made it a class project to keep her healthy til then... the little boy ended up driving
her nuts in the process of keeping care of her ... and now as a third grader unless her mouth swells or gets purple
looking people don't notice... and she makes a good indicter of some virus or something like strep getting ready to hit
the class because her face will swell and get a purple look to that side :)
My point is that sometimes you as a parent have to make choices for your child even if not popular with people
around you ... now at 8 almost 9 we let Sarah say whether she can live with the amount of excess tissue that is
there... last surgery was her choice and after next consult she and doctor will come to some decision.. I will step in
if the growth ever starts going down her neck as this could cause life threatening problems...like lack of breathing ...
and as long as it stays in soft tissue is easily removed and her mouth reshaped ... good thing is that these things
stop growing in about 98% of people after they get past puberty...
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My point is that sometimes you as a parent have to make choices for your child even if not popular with people
around you .
Soundy:
Thanks for your post and for sharing your real-life experiences that are affecting and educational for us all. Your comments were welcomed and have moved me to rescind my prior declaration that I was leaving this thread, in order that I may respond to you.
My (now adult) son never presented us with any sort of physical problem that required us to make a life-altering decision for him. Still, my wife and I both agreed that we would have done whatever was necessary to improve his life, if it ever came to that. I believe most parents would do the same.
Your handling of your child's lymphatic malformation has been commendable, but, as you noted, children can be extremely cruel. Often, with children in groups, the slightest deviation from the physical (or emotional) norm is seized upon as a reason to torment another child. This is one reason (among many) that children need almost constant adult supervision, but, realistically, we can't always protect our children from the world, which is too often merciless, but we can help them to cope as best we (and they) can.
I believe that helping a deaf child to hear, even if that hearing has limitations, is better than pretending deafness doesn't matter and by so doing, keeping a relatively helpless child from the opportunity to hear. Trying to base that decision on 'deaf pride' seems absolutely ludicrous - and callous. This is why I opposed the mothers (Marlee Matlins' character) position in the movie that was discussed. Now, I think I'm finally done here. ;D
Jim
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First, let me say that I only saw the last hour of the movie. I didn't realize that it was a Tv-Movie until I was flipping through the channels the night it was on. So, I can't speak to the entire movie, only the last half. Although, I plan on buying it when it's out on DVD so I can watch the whole thing.
With that said, let me stir the pot up a little bit with Jim.
I believe that helping a deaf child to hear, even if that hearing has limitations, is better than pretending deafness doesn't matter and by so doing, keeping a relatively helpless child from the opportunity to hear. Trying to base that decision on 'deaf pride' seems absolutely ludicrous - and callous.
Jim
I think you're missing at least one of the points of the "deaf side" of the argument. One of their points, and based on what parts of the movie I did see, the child wasn't helpless. To go back to the movie, he wasn't "broken". He seemed happy, except when seeing his parents obviously struggling in their relationship, and he was able to communicate. At one point, you saw him at a desk drawing (or something) like most kids do. Like most kids, he wanted to please his parents (when he said "Dad") and then refusing to talk after he realized that it upset his mother. Had he never tried to speak or sign then you would have never known he was deaf by any other indication. He didn't come across to me as a "relatively helpless child". I disagree with the premise that a deaf child somehow has a less than happy and productive life simply because he cannot hear. Sure, there are things that he wouldn't be able to experience that other kids would (e.g. hearing the 'crack' of a baseball bat at a game). A similar argument could be made of kids that live in the deep south. We don't get snow around here so my kids will not get the experience of making a snowman in the front yard at Christmas time. A similar argument could be made of those that are poor. They will not experience the thrill of getting a brand new Lexus on their 16th birthday (I realize that most don't). The same argument could be made of left-handed people and the fact they'll never experience being able to write in a spiral notebook without the spiral cutting into their writing hand or that the entire world is geared for right-handed people. (I'm left handed, btw) There are hundreds of examples of how circumstances would deny a child the same experiences of other children. Many of those things can be "fixed". But, that doesn't necessarily mean that they're being denied a happy life.
I think we tend to judge "quality of life" through our own experiences, and if another person doesn't get to do or experience the same joys that *I* do, then somehow they are being denied something critical in their life. Fire away!
On anothe aspect for the entire group in the discussion. There were several posts in this thread about the ending and how it left you hanging as to the outcome of the battle. I disagree. It seemed to me that the father finally realized that he wasn't acting in the best interests of his child, but in his OWN best interests. In his office near the end, he had that realization when he was telling another character that it was his job to find what was beautiful and unique about his clients, not to change them into some "norm". He realized that he was imposing his own idea of what a happy and complete life is. When he went to see his wife/ex-wife at the end, to me he was going there to end the battle by giving in to her. Again, this is my impression after only seeing the 2nd half of the movie, but it seemed to me that he was going to her to say, in essence, "You're right, I'm wrong...can you forgive me and take me back?".
*parachutes off soapbox" "WHEEEEEEEEEE!"
Brian
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Okay, Brian -
going to stir the pot a little myself :)
You're a parent. If this was your child, what would you have done?
Jan
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*sits back with freshly popped, butter, 94% fat free popcorn*
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Move over phyl, make room on the couch....I've got some milk duds to share.....They certainly aren't fat free, but I pretnd they are :)
Melissa
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Double post. See below. :-[
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ya know, I've learned that I never question someone's parenting skills or parenting decisions. What may be right for one in handling/dealing with their children (and situations) may not be right for another. Issue with the folks next door to me and I watch what they put their kids through... works for them... but it doesn't work for me.....
Phyl
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First, let me say that I only saw the last hour of the movie. I didn't realize that it was a Tv-Movie until I was flipping through the channels the night it was on. So, I can't speak to the entire movie, only the last half. Although, I plan on buying it when it's out on DVD so I can watch the whole thing.
With that said, let me stir the pot up a little bit with Jim.
I think you're missing at least one of the points of the "deaf side" of the argument. One of their points, and based on what parts of the movie I did see, the child wasn't helpless. To go back to the movie, he wasn't "broken". He seemed happy, except when seeing his parents obviously struggling in their relationship, and he was able to communicate. At one point, you saw him at a desk drawing (or something) like most kids do. Like most kids, he wanted to please his parents (when he said "Dad") and then refusing to talk after he realized that it upset his mother. Had he never tried to speak or sign then you would have never known he was deaf by any other indication. He didn't come across to me as a "relatively helpless child". I disagree with the premise that a deaf child somehow has a less than happy and productive life simply because he cannot hear. Sure, there are things that he wouldn't be able to experience that other kids would (e.g. hearing the 'crack' of a baseball bat at a game). A similar argument could be made of kids that live in the deep south. We don't get snow around here so my kids will not get the experience of making a snowman in the front yard at Christmas time. A similar argument could be made of those that are poor. They will not experience the thrill of getting a brand new Lexus on their 16th birthday (I realize that most don't). The same argument could be made of left-handed people and the fact they'll never experience being able to write in a spiral notebook without the spiral cutting into their writing hand or that the entire world is geared for right-handed people. (I'm left handed, btw) There are hundreds of examples of how circumstances would deny a child the same experiences of other children. Many of those things can be "fixed". But, that doesn't necessarily mean that they're being denied a happy life.
I think we tend to judge "quality of life" through our own experiences, and if another person doesn't get to do or experience the same joys that *I* do, then somehow they are being denied something critical in their life. Fire away!
Let me respond to your points and state that I appreciate the opportunity to debate the issue, although I think, at this point, it's nearing it's useful life as a subject of discussion. Let us remember that this was a fictional situation and that in real life such decisions are very personal - and emotionally wrenching - to the people involved. While I have strong opinions on the subject, I would never think of attempting to impose my point of view on a couple that were in the situation the movie presented. It would be none of my business and even if asked for my opinion, I would be very hesitant to offer it as I believe in parental rights and don't wish to interfere with parental decisions. No matter how strongly I might feel, unless it's my child, I have no right to tell another parent what to do, especially in such a serious decision as the movie presented. That said, discussing the issue hypothetically is fine and gives us the chance to state and defend our relative positions on the issue with no real consequence to anyone, except for a lot of tying. :)
The deaf boy was 'happy' the same way a child I know who has CP and walks very awkwardly is happy. He accepts his limitations and copes as best he can. I am convinced that he would prefer to walk normally. This boy (age 10) has had several surgeries to help him walk better. They were successful. His parents made the decision to help their son have a better chance of walking normally, even though he was 'happy' prior to having the corrective surgery, which didn't cure the underlying condition but ameliorated the consequences of the CP, just as a cochlear implant improves a deaf person's condition without actually restoring normal hearing. I see nothing wrong with that and I'm a bit surprised to learn that some do, at least in hypothetical cases, such as the movie in question ('Sweet Nothing In My Ear').
I find the contention that because a deaf child is presumed to be happy and so, should remain happily deaf, absurd. In reality, such a child is deprived of a very basic sense we use to function and this limits his opportunities. I see that position as misguided compassion, taking the concept of human equality a bit farther than common sense would dictate. The ‘happy’ deaf child portrayed in the movie relied, as all deaf people do, on hand signing to communicate. Very few people can sign or interpret sign language so this, alone, while a useful tool for the deaf, limits the child to a great degree, as the father pointed out to his deaf wife in the movie. I used the term'helpless' to describe the child's inability to obtain a cochlear implant on his own. If the mother has her way, he'll remain deaf until he is old enough to make the decision (and pay for) the implant. Until then, he depends on his parents for everything, as all minor children do. In that regard, the boy is definitely helpless. He cannot legally make the decision to have the cochlear implant much less, pay for it. By the time he is old enough to do so, he'll have been totally deaf so long that re-learning speech will be far more difficult than it would have been had he been given the implant as a child. This hardly 'respects' deafness.
The example of being left-handed fails here because being left-handed is only a minor impediment to a full, productive life and does not require surgery or an implant. Living in the south and not seeing snow is a choice and doesn't relate to the loss of hearing as an impediment because it isn't a physical problem. A bus ticket north could rectify that situation. Being poor is in the same non-relevant category. Poverty, although it can impact one's physical health, isn't a physical problem and unlike deafness, can be reversed. Deafness, as with being a paraplegic or blind, is unique, life-changing and cannot be seriously compared to being left-handed or some other minor difference. That is the point. Attempting to pretend that being deaf is simply being 'different', like being left-handed or whatever, in my opinion, is grossly misguided. Then, to compound that mistake, advocates of the mother (in the movie) would attempt to characterize the simple recognition of this profound loss (of the ability to hear) as insulting to deaf people and demand that the child's deafness be 'respected'.....by refusing to authorize a cochlear implant for the child. Further, they would contend that the deaf child is 'happy' so the father (in the movie) should just 'leave him alone' in his world of silence and concentrate on helping him sign better. Again, this is taking the reasonable and compassionate concept of 'respecting' those with infirmities or that are different from the norm to absurd, even unconscionable lengths. If a person is born with a physical affliction that cannot be helped with medicine, technology or surgery, that concept of acceptance (for the person and society) applies and we employ it all the time. However, when a child is born with (or develops) a serious physical handicap, such as deafness, and can be helped (to hear) with a combination of technology and (implant) surgery, to ignore that opportunity to help the child on the basis of 'respecting' his deafness seems wrong to me. It's also easy to impose this alleged 'respect' when one does not suffer from the same handicap.
On another aspect for the entire group in the discussion. There were several posts in this thread about the ending and how it left you hanging as to the outcome of the battle. I disagree. It seemed to me that the father finally realized that he wasn't acting in the best interests of his child, but in his OWN best interests. In his office near the end, he had that realization when he was telling another character that it was his job to find what was beautiful and unique about his clients, not to change them into some "norm". He realized that he was imposing his own idea of what a happy and complete life is. When he went to see his wife/ex-wife at the end, to me he was going there to end the battle by giving in to her. Again, this is my impression after only seeing the 2nd half of the movie, but it seemed to me that he was going to her to say, in essence, "You're right, I'm wrong...can you forgive me and take me back?".
*parachutes off soapbox" "WHEEEEEEEEEE!"
Brian
I disagree, Brian. Gee, what a surprise! ;)
I think you're reading into the movie's conclusion what you want it to be, which supports your position. You could be right, but I believe the writers purposely left the ending ambiguous so they wouldn't offend anyone by taking a definite stand on the issue, as this thread - and your arguments - make it obvious that the issue is somewhat contentious.
In the final analysis, as Phyl noted earlier, it's a personal choice for the real-life parents of a deaf child to decide. These comments are simply personal opinions, pro and con, with no real impact on anyone. That being the case, I think we can agree to disagree on the issue. I'm willing, as I'm sure you are. :)
Jim
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Since there is popcorn and milk duds, I'll join in. :D
I think a good compromise on Adam would be to put in the cochlear implant, and then continue to raise him as if he were deaf. By that I mean teach him sign language (and learn it themselves), put him in an education situation that supports deaf children, find him deaf or nearly deaf friends, and so on. It is not the technology itself, but the presumption that if he has an implant, he can hear normally, and should be able to speak and converse normally. If that becomes the expectation, and he can't live up to it, he might be in for a childhood of misery and torment. On the other hand, if he can grow up in a deaf-supporting environment, and have the added bonus of a little bit of hearing, so much the better.
To be honest, I didn't actually see the movie, so this is based entirely on what I'm reading here, and many conversations with my sister, who is a professional sign language interpreter and has worked in the Seattle deaf community for many years.
It is too bad that our society tends to polarize on issues, under that mistaken notion that stubbornness equates to dedication, but we all know that it is very common. I think both sides on this issue go too far when making their arguments - in the movie, of course, not the forum. ;)
Steve
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Jim -
good debate, your points are well taken.
Steve -
I'm not playing favorites here :) What you're saying makes total sense to me; it's very logical and, as an accountant, I like logical things. Pass the milk duds, please.
Brian -
I still wonder if you'd feel differently if the child in question was yours. I only ask because as a parent, I've had to make decisions on behalf of both my children that I never thought I'd ever have to make. It kind of goes with the territory. In my case it's a little easier to make the hard decisions because I don't have to agree or compromise with a spouse, but then again I have the disadvantage of not always looking at both sides of an issue. A couple of times during the movie I wondered what I'd do if the boy were my child.
Jan
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Oh how I miss debating "hot" topics. I used to do it all the time in college. Then, a "real" job, marriage, kids, bills, etc.. all got in the way.
Jim - All good points. I should point out that I never expressed my argument directly as MY argument, but a defense of the "deaf side". I totally agree that parenting decisions are very personal ones and should be made within the immediate family and not taking into account what everyone else thinks or feels about it. About the ending, I admitted that I hadn't seen the whole movie, which could have jaded my interpretation of the ending. I stated how *I* took the ending to mean in the context the little bit of the movie I actually got to see. I could be wrong. I'll watch the whole thing when it comes out on DVD and re-evaluate then. So far as the debate goes, I'll agree to leave the dead horse be. Again, in true debate form, I wasn't necessarily stating *MY* beliefs but taking the "other side" for the purposes of the debate itself. Like you, I enjoy it so long as it doesn't degenerate to ad hominem attacks that take away from the discussion. I used to really irritate people by convincingly arguing one side of an argument only to come back later and just as convincingly argue the other side. It's the debate itself that I love. :*)
Jan - To address your question. My first thought is that it's not a fair question. The situation would be different than the ficticious scenario (the movie) that we're discussing. I'm not deaf (at least not yet) and my wife isn't either. Neither of us know sign language (at least not enough to effectively communicate with a deaf person) If we had a child that was born hearing and then went deaf, our thought process and life experiences would guide our decision on the implant surgery. What guides and motivates me, as a hearing parent married to a hearing parent, would be VASTLY different than that of the characters in the movie. Taking the differences in the situations out of the mix, I think I would opt for the implants. My wife may take a totally different stance, though. She's deathly afraid of any kind of medical procedures especially when it involves the kids. Don't get me wrong, she'd allow procedures, even if very scary to her, in the situation where their health would be jeapordized without the treatment, but implants would be essentially an elective procedure and not needed to save their life or protect from further life-threatening things. That's the long answer. The short answer is, I don't know what we would decide to do. It's not a black and white issue (as evidenced by the very discussion we're having right now). If your queston was intended to be "what would I do if I were the parent in the movie" then again it's tough because I didn't have the benefit of seeing the whole movie so I don't think I'm qualified to make that call. I didn't get the benefit of seeing the first half of the movie, which I presume had lots of character development that would shape my opinion on the characters, especially the mother and father. It's hard not to interject my own life into the thought process of making the decision, and having gone through a very rough time in my marriage and literally dragging it back from the depths of heck to where we are now, I tend to think that I would have done whatever I needed to do in order to preserve the family even if that meant relenting to not going through with the implant. I believe that keeping the family as a single unit and united would likely have outweighed my personal opinions on the implants. Does either of those answer your question?
So, we have popcorn and milk duds, but did anyone bring the skittles? ;)
~Brian
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*passes bag of littl' skittles down the sofa*
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Brian: Thanks for the discussion. Really. :)
I don't generally seek debate - especially on the internet - but I don't hesitate to state a position I believe in and I'm always willing to defend it as well as consider the opposite point of view. As this is a support site for AN patients I harbored no desire to engage in ad hominem attacks on anyone and, re-reading my posts, I don't believe I've done so - and neither have you. I simply feel the 'pro-deaf' argument is flawed. I've offered numerous reasons explaining why I hold that point of view. I stand by my original contention.
Again, let us not forget that this was simply a TV movie - fiction - although probably based on reality. A reality I'm thankful I never had to live through. The fact that one parent was deaf (in the movie and, ironically, in real life) skewed the fictional decision-making process but was likely added to generate conflict and enhance the inherent pathos of the story.
At this point, despite a few 'bystanders' using the discussion as an excuse to snack, I feel I've exhausted the subject, but if you wish to have a last word on it, I'm amenable to that.
Jim
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At this point, despite a few 'bystanders' using the discussion as an excuse to snack, I feel I've exhausted the subject, but if you wish to have a last word on it, I'm amenable to that.
HEY!!!!!!!!! I resemble that remark!!!!!!!!!!!!!!!!!!! :o
;)
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Ok, I'm up for snacks and a word or two on the issue.
I am currently taking American Sign Language classes and have spent a great deal of this school semester learning about Deaf culture. (By the way, the Deaf community is referred to by using a capital "D", as it is considered their culture, much like being Irish or Canadian). They do not consider themselves handicapped because they can't hear. In fact, the only thing a Deaf person can't do is answer the phone, but with new technology, even that is becoming a possiblity.
I think a lot of the issues that Laura had were based on her fear of her son not being able to identify himself with any particular social group. He may be looked upon by the Deaf community as having considered himself "broken" because he was deaf and got the implant, so he may not be accepted as a part of that group. He may also not be accepted into the hearing community because he does not hear like naturally hearing people. He'd be stuck in the middle.
I do think, that if it had been my child, I would probably do the implant, but also make sure that he learned to sign fluently so that there is an open line of communication between both parents and the child. In the case of a child, if you're going to do a Cochlear Implant, it's probably best to do it early, so there aren't any speech delays later. If you allow the child to remain deaf until he's old enough to decide on his own, he's already way behind on his oral communication skills. On the other hand, if you do the implant early and the child decides later on that he does not want to associate himself with the hearing community, he just doesn't have to wear the CI processor.
We have a very active Deaf community here in Nashville - most of the churches have Deaf Church every weekend, there are Deaf employees at our mall and they meet once a month at a local mall food court for a Silent Dinner, where they have an opportunity to interact and socialize. I certainly do not consider any of them handicapped. There are quite a few that have a higher level of college education than I do.
Pass some chocolate!
Lori
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Hi, Lori:
Thanks for your input - and a slightly different point of view. Your association with the Deaf community is valuable in understanding this issue. I concur with your conclusions regarding a Cochlear Implant for a child, so I won't bother re-hashing the issues raised by the TV movie and exhaustively discussed on this thread.
I'm aware that the Deaf community (I got it) is determined to characterize deafness as a non-handicap and that is certainly their prerogative. I'm rather skeptical of the honesty of that position but I see no reason to argue about it, either. People may describe themselves in whatever way they want However, because deafness is an absence of one of the most basic human senses, attempting to present it as now socially equal to one's race or sexual preference and so, render deafness something we pretend to ignore, even when we sometimes simply cannot, makes the concept of 'deaf pride' somewhat Quixotic, in my opinion, but then, no one asked my opinion. I just offer it here as another POV. As a person with SSD, I certainly have absolutely no desire to denigrate deaf people. If members of the Deaf community choose not to view deafness as a handicap, so be it. I truly hope that in the near future, technology will make that position totally realistic.
Jim
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I have known deaf people who are perfectly happy deaf and don't wish to hear...or
if they do they hide it well...
With DJ the little boy at school... the little bit of hearing that he now has has so improved
his quality of life and change him from a sad often crying child to one we see smile... for
him the implant has been a blessing ... for others they may do OK without ...goes back
to each family must decide for themselves what is right for their child and personal
situation ... and if possible let the child be in on decision making if they can understand
what is going on and going to happen...
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Lori -
thanks for shedding some light on this subject. Your thoughts on the cochlear for children make a lot of sense to me.
I'm curious as to how you became interested in sign language - it's something that's always fascinated me. Was this something that grew out of your AN experience? or did you plan to study sign language prior to your AN?
I also think it's cool that there is an entire deaf community in Nashville 8) I can't say I'm aware of any in my area, but it's highly possible that I'm just out of touch. Before I became SSD, I wasn't really aware of people with hearing issues - now it seems like I'm constantly noticing people who wear hearing aids. I haven't run across anyone who wears a BAHA yet - except for a woman I met at a local ANA support group meeting about a year ago - but I'm keeping my eyes open.
Jan
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Jim - I reply not to have the last word, but to affirm that you did not degenerate to ad hominem attacks. I hope you didn't take from what I wrote that I thought you had. My point was only that I enjoy debate so long as it doesn't get to that point because there is no quicker way to destroy a healthy discussion than attacking someone personally. I try very hard not to do that and I appreciate that you (and others) didn't do that.
Thanks for the skittles, Phyl. :)
And thanks to everyone for sharing their experience and "take" on the issue. I take away from it that everyone has their own opinion on the subject born out of their own life experience. Like so many issues of the day, there really is no "right" answer. "Right" is in the eye of the person / people making the decision. Nothing more, nothing less. As Kate would say (Hi Kate!), one size doesn't fit all. See? I've been reading the forum long enough to quote other people!
Thanks again, all!
Brian
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Jan,
I've always had a desire to learn ASL and tried to learn from a book on my own. Didn't work. When I worked in a hospital, I realized that it would have been helpful at times because we had deaf patients every now and then and it would take forever to have to write things back and forth if there was no interpreter available.
After I lost hearing in one ear, I decided it was time to do something. I had always just taken my hearing for granted and never expected to lose any of it, since I've always had what the audiologist descibed as "super-human hearing". Hey, I'm a Mom, I'm supposed to hear everything! So I decided I'd learn and teach my family so that if something happens to my good ear someday, I'm not left with no way of communicating. Besides, i'm Italian and talk with my hands all the time anyway, so I figured I might as well make it an official language!
The League for the Deaf and Hard of Hearing has classes here. You should check it out by you. The libraries have classes a lot too, and they are usually free, but ours were all downtown and at inconvenient times, so I didn't take one of those. I "graduate" ASL 1 in 3 weeks and then start part 2 right after that.
It came in very handy on the plane to Arizona last week because I couldn't hear well with all the noise and my husband was sitting across the aisle on my deaf side. We had to resort to ASL. Fortunately we know enough that we can get the general point across. And, by the way, that DEAF RIGHT pin I ordered was a great way to keep my airplane "neighbor" from talking to me the entire flight. She was a salesperson for some kind of makeup and was trying to sell to everyone in sight. She figured she wouldn't waste her breath on someone who couldn't hear her! :D
Lori
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Lori,
As usual, you see positive in every situation. You just keep me smiling! Thanks!
Reagrding the ASL: do you use both hands or you can get away with just one?
Eve
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The League for the Deaf and Hard of Hearing has classes here. You should check it out by you.
Lori -
I'd love to check this out. Is there a web site or something to get me started?
Also, great idea about the ANA pin. I ordered 2 deaf left ones after my AN surgery. I'll have to remember to wear one especially when I'm traveling - sometimes the crowds are SO noisy.
Jan