Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 brad i never wore HA's before implant i am way too deaf for HA but before implanting i had to under go testing with the most powerful HA i had to have molds made wait two weeks then go for testing had i heard anything using these HA then i would have had to wear them for 6 weeks then do hearing testing again most everyone who goes for a CI has had HA and the reason why they decide to look into a CI is because their HA no longer give them the hearing they want and need i do know of several people who were sold very expensive aids which provided very limited hearing never once were these people told a word about CI from the HA dealers to me this is wrong the time and money put into new HA that didn't work and wouldn't work should have gone into better things like CI's insurance companies need proof that HA do not give functional hearing in order for the insurance company to pay for a CI susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Alice, Yes, I have performed CI evaluations and have also talked to audiologists at several centers and I am sorry to say I don't share your conviction that the majority of centers are as diligent as it appears your center was. It seems that there are almost as many protocols as there are centers. I'm also concerned that if an ENT decides to start doing CI's, (s)he and their audiologist are often considered a " center " . I also had the personal experience of evaluating a person who, had I followed the center's protocol would have been implanted. Using the " gold standard " hearing aid as defined by that center, he scored 12% on one syllable words (recorded on CD) at 70 dB. I " broke the rules " and tested him with a pair of power digital hearing aids and he scored 48%. That was with no experience with hearing aids in 40 years. As you would expect with a CI, the longer he wore the hearing aids, the better he heard. With candidacy opening up, I have to wonder if this won't happen more often. I've also seen activations and I agree that for appropriate candidates, it is an exciting experience. But it is also exciting to be the audiologist who finally gives a child the ability hear and discriminate " s " by simply making a more appropriate earmold, or to expose someone to a technology like dynamic frequency compression used in the AVR ImpaCt. In addition to this listserv, I monitor several hearing aid lists and it is clear that the level of diligence in hearing aids is variable at best. The center where I worked may have been " current " with CI', but they were certainly several years behind the times with hearing aids and about 20 years behind in earmolds. I am also concerned about controls, but having worked with many insurance companies in the provision of hearing aids, I have rarely, if ever, seen any requirements to provide specific documentation of measurable benefit, though I think this will come. I do not know if this is a condition of CI coverage, but I do know that during the year I worked at this center (1999) disclosure of our protocols and results were never discussed in regards to a specific patient's coverage. Data were collected by our scientists, but that is a different matter. I'm not trying to put down the CI or the appropriate provision of services related to them, but the more I hear, the more I feel like there is a lot of variability in terms of evaluation and candidacy determination that makes me less than comfortable professionally and personally. If there is any data indicating how many centers adhere to certain protocols or what hearing aids, earmolds and ALD's CI recipients used (with their results) prior to implantation, I'd be VERY interested in reading it. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... Brad I can understand and appreciate your concerns. It is aways good to be comfortable with a criteria for a procedure such as this. I can share with you my own experience and feel very comfortable that this compairable with all CI programs. A vigorous testing takes place before a patient can begin the journey to a CI. We have tried, used, tested, cleaned, molded and listened over and over again. We are required to use the best possible hearing aids for our hearing needs for a period of time. Having a CI is not encouraged until every possible alternative method has been tested. Even then, the testing goes on and it is rigid and lengthy. We sit in the same booth in which we had hearing testing. The speakers are not moved..they are in the same places as is the seating arrangement. There is actually more testing done to validate the need for a CI than is done for hearing aids. Many of the centers that provide CI's also provide hearing aids and/or BAHA devices. The CI is just one of the ways these dedicated professionals use to help their patients with their hearing needs. I do know that given the choice, if a hearing aid worked for me, I would not have opted for a surgical procedure instead. I would imagine there can be variables with hearing aids and CIs as it's impossible to know that every hearing aid provider is following the same exact criteria with their clients. Have you ever asked to participate in a CI evaluation? Since your interest is high in this area, this might be something you would really enjoy. If you do decide to do this, please follow it thru to the activation. I can't even begin to tell you how relieved I was to finally hear after a very extended period of time working with different hearing aids thru two different medical facilities. We gave it many long and difficult months before we began to lean toward a cochlear implant. Looking back now, except for the fact that I proved to myself that there was no other choice, I feel that a great deal of time and a lot of money was wasted getting me to the point of being an approved CI candidate and finally a CI user who could hear. I believe we can rest assured that it is a rare occasion for someone to be implanted who could have done the same or better with a hearing aid. Since insurance companies are very much involved, the controls are tightly monitored. Actually, I'm more concerned that people are being mistreated by hearing aid dealers who are just out to make a sale and can get by with it. Unfortunately, too many people are tricked into big dollar purchase for hearing aids that are useless to them. I've met many of them. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Brad, I want to step in here and ask a question or make a comment or two if you don't mind. First, Thank you for all of your comments. It's all very interesting and food for thought. Now fast forward to the real world<smiles> and think of your average person who could possibly benefit some from high tech hearing aids at a cost that for the most part, insurance doesn't cover and now hearing programs and hearing aids have been excluded from some state Medical programs. Where does this leave that person? Are they to struggle until they are " deaf enough " because they can't afford the cost of the hearing aids? What does this person do after their trial period with high tech hearing aids ends and they still aren't considered deaf enough to be implanted? Kind of seems to be a no win situation there. Maybe you could give some light on why most insurance companies still don't cover the cost of a simple hearing aid yet alone a high tech one. These were just some thoughts I had as one of several members of a family of late deafened members(progressive nerve deafness) some of whom have always had to struggle to buy any type of hearing aid over the years let alone a high tech one. 4 of us now have implants, but we were definitely deaf enough at the time of implant.<smile> Regards, Silly MI In , " Brad Ingrao " <bingrao@h...> wrote: > Alice, > > Yes, I have performed CI evaluations and have also talked to > audiologists at several centers and I am sorry to say I don't share your > conviction that the majority of centers are as diligent as it appears > your center was. It seems that there are almost as many protocols as > there are centers. I'm also concerned that if an ENT decides to start > doing CI's, (s)he and their audiologist are often considered a " center " . > > I also had the personal experience of evaluating a person who, had I > followed the center's protocol would have been implanted. Using the > " gold standard " hearing aid as defined by that center, he scored 12% on > one syllable words (recorded on CD) at 70 dB. I " broke the rules " and > tested him with a pair of power digital hearing aids and he scored 48%. > That was with no experience with hearing aids in 40 years. As you would > expect with a CI, the longer he wore the hearing aids, the better he > heard. With candidacy opening up, I have to wonder if this won't happen > more often. > > I've also seen activations and I agree that for appropriate candidates, > it is an exciting experience. But it is also exciting to be the > audiologist who finally gives a child the ability hear and discriminate > " s " by simply making a more appropriate earmold, or to expose someone to > a technology like dynamic frequency compression used in the AVR ImpaCt. > > > In addition to this listserv, I monitor several hearing aid lists and it > is clear that the level of diligence in hearing aids is variable at > best. The center where I worked may have been " current " with CI', but > they were certainly several years behind the times with hearing aids > and about 20 years behind in earmolds. > > I am also concerned about controls, but having worked with many > insurance companies in the provision of hearing aids, I have rarely, if > ever, seen any requirements to provide specific documentation of > measurable benefit, though I think this will come. I do not know if > this is a condition of CI coverage, but I do know that during the year I > worked at this center (1999) disclosure of our protocols and results > were never discussed in regards to a specific patient's coverage. Data > were collected by our scientists, but that is a different matter. > > I'm not trying to put down the CI or the appropriate provision of > services related to them, but the more I hear, the more I feel like > there is a lot of variability in terms of evaluation and candidacy > determination that makes me less than comfortable professionally and > personally. > > If there is any data indicating how many centers adhere to certain > protocols or what hearing aids, earmolds and ALD's CI recipients used > (with their results) prior to implantation, I'd be VERY interested in > reading it. > > ____________________________________________ > Best Regards, > > Brad Ingrao, M.S.Ed. CCC-A, FAAA > Editor > EDEN - The Electronic Deaf Education Network > www.bradingrao.com > e-mail: info@b... > > > > > Brad > > I can understand and appreciate your concerns. It is aways good to be > comfortable with a criteria for a procedure such as this. I can share > with you my own experience and feel very comfortable that this > compairable with all CI programs. > > A vigorous testing takes place before a patient can begin the journey to > a CI. We have tried, used, tested, cleaned, molded and listened over > and over again. We are required to use the best possible hearing aids > for our hearing needs for a period of time. Having a CI is not > encouraged until every possible alternative method has been tested. > Even then, the testing goes on and it is rigid and lengthy. We sit in > the same booth in which we had hearing testing. The speakers are not > moved..they are in the same places as is the seating arrangement. > There is actually more testing done to validate the need for a CI than > is done for hearing aids. Many of the centers that provide CI's also > provide hearing aids and/or BAHA devices. The CI is just one of the > ways these dedicated professionals use to help their patients with their > hearing needs. I do know that given the choice, if a hearing aid worked > for me, I would not have opted for a surgical procedure instead. I would > imagine there can be variables with hearing aids and CIs as it's > impossible to know that every hearing aid provider is following the same > exact criteria with their clients. > > Have you ever asked to participate in a CI evaluation? Since your > interest is high in this area, this might be something you would really > enjoy. If you do decide to do this, please follow it thru to the > activation. I can't even begin to tell you how relieved I was to > finally hear after a very extended period of time working with different > hearing aids thru two different medical facilities. We gave it many > long and difficult months before we began to lean toward a cochlear > implant. Looking back now, except for the fact that I proved to myself > that there was no other choice, I feel that a great deal of time and a > lot of money was wasted getting me to the point of being an approved CI > candidate and finally a CI user who could hear. > > I believe we can rest assured that it is a rare occasion for someone to > be implanted who could have done the same or better with a hearing aid. > Since insurance companies are very much involved, the controls are > tightly monitored. Actually, I'm more concerned that people are being > mistreated by hearing aid dealers who are just out to make a sale and > can get by with it. Unfortunately, too many people are tricked into big > dollar purchase for hearing aids that are useless to them. I've met > many of them. > > Alice > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 When my mother went for testing to get a CI she was put through alot of test, some that made her sick and amost ready to back out. When I went to be tested I expected the same... all I got was a hearing test. But then I have been wearing aids for the past 40 years susan & hobbes michigan >A vigorous testing takes place before a patient can begin the journey to >a CI. We have tried, used, tested, cleaned, molded and listened over >and over again. We are required to use the best possible hearing aids >for our hearing needs for a period of time. Having a CI is not >encouraged until every possible alternative method has been tested. >Even then, the testing goes on and it is rigid and lengthy. We sit in Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Thanks for the information and clarification . I agree that it is inappropriate for a person never to hear about CI's just as I think it's inappropriate for them not to hear about T-Coils, FM and earmold modifications. It appears that my next step is to poll some insurance carriers and find out what criteria they are using to determine " no hearing aid benefit. " This is rising to the surface as the weakest link in this chain as far as I can see it. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... Re: Brad brad i never wore HA's before implant i am way too deaf for HA but before implanting i had to under go testing with the most powerful HA i had to have molds made wait two weeks then go for testing had i heard anything using these HA then i would have had to wear them for 6 weeks then do hearing testing again most everyone who goes for a CI has had HA and the reason why they decide to look into a CI is because their HA no longer give them the hearing they want and need i do know of several people who were sold very expensive aids which provided very limited hearing never once were these people told a word about CI from the HA dealers to me this is wrong the time and money put into new HA that didn't work and wouldn't work should have gone into better things like CI's insurance companies need proof that HA do not give functional hearing in order for the insurance company to pay for a CI susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Alice, I certainly agree with you about better standards and second opinions! Brad Brad <If there is any data indicating how many centers adhere to certain protocols or what hearing aids, earmolds and ALD's CI recipients used(with their results) prior to implantation, I'd be VERY interested in reading it. Brad> Yes.. this would be a good data. I would be interested in reading it as well. You have presented a very interesting topic today. Your comments about the patient who benefited by the hearing aids after meeting the criteria for a CI were indeed interesting. In my case, I used a " powerful digital hearing aid " at a cost of $2400 at the time, which didn't provide me with functional sound. A standard protocol should certainly be in order. Likewise for hearing aid vendors. I guess there can be good and bad in everything. This is a tough subject. As patients, we are at the mercy of the professionals and have to believe that they are following all the appropriate guidelines. This points back to some previous threads we've discussed about making sure you are going to a reputable center and when in doubt..getting that second opinion. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Good plan ! I thought I'd take a shot here first, but at this point, going to the horse's mouth is in order. I did just get a funny e-mail that said that " For every action there is an equal and opposite government program " ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... RE: Candidacy Requirements Alice, I am still looking for the FDA document. It's interesting that the 3 manufacturers have vastly different representations of the regulations. One would think they would all have a link to the actual document. It's a bit disturbing to me that it is so difficult to locate this document. ________________________________________________________________ The best thing to hit the Internet in years - Juno SpeedBand! Surf the Web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 brad i think that s great how you can see your son as the individual that he is. everyone is unique and has different needs and skills. if more people could see us deaf ies as indiviuals who happen to be deaf, i thinkthe world would be a better place. its great that you accept your son and decide what is best for him at this time given all of his circumstances, skills, temperament, etc. and not based on what your own desires pr needs are or what the current trend is. jjust as no one educational program can meet the needs of all deaf children, ci is not for all deaf people and we need to respect that too. deaf culture sign langauge and bibi are all great things that add to our lives. he is fortunate to have someone as wise and knowledgable as you to guide him, especially with such a difficult background to overcome. He will thrive and do well. jb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 JB, Thanks, but I don't know any other way of dealing with people other than treating each one as an individual. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... Re: Brad brad i think that s great how you can see your son as the individual that he is. everyone is unique and has different needs and skills. if more people could see us deaf ies as indiviuals who happen to be deaf, i thinkthe world would be a better place. its great that you accept your son and decide what is best for him at this time given all of his circumstances, skills, temperament, etc. and not based on what your own desires pr needs are or what the current trend is. jjust as no one educational program can meet the needs of all deaf children, ci is not for all deaf people and we need to respect that too. deaf culture sign langauge and bibi are all great things that add to our lives. he is fortunate to have someone as wise and knowledgable as you to guide him, especially with such a difficult background to overcome. He will thrive and do well. jb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 Alice, I agree with the family dynamic changes that follow major hearing changes (in both directions). I have a different perspective than most hearing people because I do have a place in the Deaf community and can easily imagine a full life without hearing. Of course, I can't say that with 100% certainty since I still have my hearing, but since I know so many Deaf people who are not " missing " anything, I feel pretty good about that statement. That option is, of course, not open to everyone, and for someone who has progressed out of hearing, the CI is very likely the best solution. But I am concerned when distorted statistics like " 100% success " get repeated so often that the message begins to be, " Can't hear well, get a CI, can't hurt. " While I agree that the chances of improvement are probably better than not, without reliable independent sources of data, I don't feel comfortable joining the pep squad. At a convention recently I asked a few representatives from CI manufacturers about " less than expected " and " less than optimal " results and they all admitted that they really have no idea of how many people fall into these categories because the CI centers don't report those data. Even more disturbing was a CI recipient with only fair results who was being pressured by audiologists and other CI users to exaggerate how well they were doing, or at least not volunteer information about their less than expected results. As recently as this week I read of one member of this list actively seeking a CI and being told to " go for it " only to hear just a bit later that they have a profound loss and are wearing CIC's. There is no way that this person is optimally aided and in fact, their audiologist is initiating a BTE trial prior to making a determination. Many people were willing to encourage this person to move forward with a CI evaluation, yet no one asked anything about hearing aids. So I suppose I'm saying that I see the general theme of " CI's will always help you if... " strikes me very similar to the whole brand thing. Your recent request to omit brand information so as not to color a person's choice made a lot of sense. If a person joins this list and only hears the wonderful positive experiences and " It will get better, I know it will " but never hears about people who do " just OK " they may be disappointed without preparation. If, on the other hand, there is a balance of " good, bad and in-between " then expectations might be more realistic and those who exceed them would feel an even greater sense of accomplishment. By the way, if I lost an arm tomorrow, I doubt I'd seek help " in any form " but that's just me. I avoid medical and surgical interventions unless my life is at imminent peril. More than that, I have a lot of experience with people with a variety of disabilities in the " independent living " movement which, unlike the prevailing medical model of hearing loss (your ears are broken and therefore they - and you - need to be fixed) is full of people who accept their differences and live successful lives by finding reasonable accommodations and working the system rather than vice versa. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Brad, None of us on the list are professionals. So while many do try to present accurate information, truth is, we are here to share our eprsonal experiences. Is the CI testing process less than ideal? Perhaps. Would most of us benefit from better hearing aid fitting? I wonder. How far can one take this? And who is going to pay for it. Today's hearing aids run in the thousands. Each. Before you go and state that a CI is over $50grand, keep reading. As I said before, I was born with a mild loss in both ears. I worked at a job where I dealt withe mechanics and customers and used the phone all day long. Then I noticed there was a change. Eventually I hated to pick up the phone. When I was fitted with new aids (the last set), I used the phone again....but not for long. I was still losing hearing. I imagine that today, if it was not for the CI, I probably would be friendless, and clueless. Because I am also legally blind, and too old to learn sign. Sure, if I tried harder.... Or if I kept trying the latest hearing aids. Who pays for that? How is the best, the strongest, the most powerful aid going to help me when all it will do is (insert scene from back the the Future when J Fox picks his guitar and is blown across the room by the humungous speaker that DOc created). Its better than nothing. Again, this being a list inhabited by non professionals, we tend to be relative. It cannot be helped. Some of us are not into numbers. I am one of them. That is ok. Let the CI companies, the audies, the hearing aid profession, etc. deal with numbers and let them work on creating a standard that wont fail. I am 100% successful, my CI works. But that is nto what you want to hear, I know. So who is going to do the thankless task of collecting unbiased, totally ccurate, unmistakable data? And who will decide what to sue for the criteria? Oh, and how should it be interpreted? I know a young aldy who gained little from the current crop of HAs. Yet she did mot pass the criteria for a CI. Why? Because she was able to anticipate the sentence tests. She is in the education field and went by the context. You said, " If a person joins this list and only hears the wonderful positive experiences and " It will get better, I know it will " but never hears about people who do " just OK " they may be disappointed without preparation. If, on the other hand, there is a balance of " good, bad and in-between " then expectations might be more realistic and those who exceed them would feel an even greater sense of accomplishment. " This is where we flop. After all, we are not pros, we are just people trying to make the most of what we have. How many of us will write and say, " hell, I cant make it work for me like you guys do! Its not living up to my expectations! " And so on. Its that human nature. Dont think we can change that. If we could, it would surely paint a more balance picture, I agree. " If I lost an arm.... " Many do not truly know what they would do if.... On one list, there was a debate on " if I had a choice between sight and hearing, I would choose.... " Its pointless, really. We cannot know unless we face it. Just as its pointless to state that you would do nothing more about a lost arm than to seek reasonable accomodations. That may well be all you need. Many deaf people do that. You say that if you went deaf, you would have no problem adjusting because you are part of the deaf world. You might. But you dont know. No one knows. A person born deaf, or born blind, do not know anything else. There are blind people who would not consider regaining sifgt, just as some deaf people would not consider a CI/ There are poeple who never leave town because they dont know what lies beyond the borders. Some people talk about the joys of cooking the old fashioned way. Its fun! But ask a pioneer how much fun it was. Way different. Today we have SO many options at our disposal. When we reach the point of frustrations, we want to reach for what is there. I got frustrated. I got a CI. Its not perfect, its not meeting my expectations. But I just have not gotten there yet. I didnt know where my life was going pre-CI. But it was downhill. Now its uphill. Well, I dont know if I helped any. I believe tho that you would want to understand that what you read here is relative to the writer. And that what you read is from a personal view, and not that of a professional. By the way, seeking reasonable accomodation itself can and is a nightmare. Society just does not care unless it is forced to provide " reasonable accomodation " . It never ends. There are even opposing views within the disabled community on what is acceptable as a reasonable accomodation. Closed captioning for example is not and probably will never reach 100%. How frustrating to find a movie on TV, and discover its not captioned. Or, a blind person with a guide dog needing a cab and being told, no dog no dog! What of a wheelchair user who cant use the bathroom in a store because they never got around to upgrading, and he has to frantically wheel all the way across a parking lot because Mcs HAS to have those accesible restrooms. And he barely makes it. When we lose a part of our body, be it a limb or sense, we are at society's mercy. Its one thing to sit on the other side and think its possible, a totally different reality when we are the one facing it head on. Sigh. I had no idea how that soapbox got there. Anyway. *---* *---* *---* *---* *---* Sometimes one at a time is better than nothing at all. & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Hi Brad, I'm supposed to have BTE test but it didn't happened because my hearing is bad and I'm having trouble with increased loudness. My left ear experience pain when loud high frequency is given even if I *cannot* hear the sound. (will hyperacusis problem go away with Cochlear Implant?) Here's the result of my audiogram taken today: (frequency / right / left) 250 / 55 / 60 500 / 70 / 70 1000 / 85 / 100 2000 / 80 / 95 4000 / 115 / 115 As far as I know the 115 in the left ear is supposed to be NR since I cannot hear it at all. You will have to define the scope of independency/dependency to tackle the issue of hearing loss making one dependent. With some disability, no matter what, you are just incapable of doing something because it *phyiscally* limit you. Even independent deaf, when told to listen to news, is practically impossible. Hearing people get used to hearing environment, and they want to be there, so they become dependent on that environment when they have hearing loss. In the end, it's a matter of what kind of life you want to live on. Regards/ Jerome RE: Brad Alice, I agree with the family dynamic changes that follow major hearing changes (in both directions). I have a different perspective than most hearing people because I do have a place in the Deaf community and can easily imagine a full life without hearing. Of course, I can't say that with 100% certainty since I still have my hearing, but since I know so many Deaf people who are not " missing " anything, I feel pretty good about that statement. That option is, of course, not open to everyone, and for someone who has progressed out of hearing, the CI is very likely the best solution. But I am concerned when distorted statistics like " 100% success " get repeated so often that the message begins to be, " Can't hear well, get a CI, can't hurt. " While I agree that the chances of improvement are probably better than not, without reliable independent sources of data, I don't feel comfortable joining the pep squad. At a convention recently I asked a few representatives from CI manufacturers about " less than expected " and " less than optimal " results and they all admitted that they really have no idea of how many people fall into these categories because the CI centers don't report those data. Even more disturbing was a CI recipient with only fair results who was being pressured by audiologists and other CI users to exaggerate how well they were doing, or at least not volunteer information about their less than expected results. As recently as this week I read of one member of this list actively seeking a CI and being told to " go for it " only to hear just a bit later that they have a profound loss and are wearing CIC's. There is no way that this person is optimally aided and in fact, their audiologist is initiating a BTE trial prior to making a determination. Many people were willing to encourage this person to move forward with a CI evaluation, yet no one asked anything about hearing aids. So I suppose I'm saying that I see the general theme of " CI's will always help you if... " strikes me very similar to the whole brand thing. Your recent request to omit brand information so as not to color a person's choice made a lot of sense. If a person joins this list and only hears the wonderful positive experiences and " It will get better, I know it will " but never hears about people who do " just OK " they may be disappointed without preparation. If, on the other hand, there is a balance of " good, bad and in-between " then expectations might be more realistic and those who exceed them would feel an even greater sense of accomplishment. By the way, if I lost an arm tomorrow, I doubt I'd seek help " in any form " but that's just me. I avoid medical and surgical interventions unless my life is at imminent peril. More than that, I have a lot of experience with people with a variety of disabilities in the " independent living " movement which, unlike the prevailing medical model of hearing loss (your ears are broken and therefore they - and you - need to be fixed) is full of people who accept their differences and live successful lives by finding reasonable accommodations and working the system rather than vice versa. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Thanks for the clarifications and perspective . ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... Re: Brad Brad, None of us on the list are professionals. So while many do try to present accurate information, truth is, we are here to share our eprsonal experiences. Is the CI testing process less than ideal? Perhaps. Would most of us benefit from better hearing aid fitting? I wonder. How far can one take this? And who is going to pay for it. Today's hearing aids run in the thousands. Each. Before you go and state that a CI is over $50grand, keep reading. As I said before, I was born with a mild loss in both ears. I worked at a job where I dealt withe mechanics and customers and used the phone all day long. Then I noticed there was a change. Eventually I hated to pick up the phone. When I was fitted with new aids (the last set), I used the phone again....but not for long. I was still losing hearing. I imagine that today, if it was not for the CI, I probably would be friendless, and clueless. Because I am also legally blind, and too old to learn sign. Sure, if I tried harder.... Or if I kept trying the latest hearing aids. Who pays for that? How is the best, the strongest, the most powerful aid going to help me when all it will do is (insert scene from back the the Future when J Fox picks his guitar and is blown across the room by the humungous speaker that DOc created). Its better than nothing. Again, this being a list inhabited by non professionals, we tend to be relative. It cannot be helped. Some of us are not into numbers. I am one of them. That is ok. Let the CI companies, the audies, the hearing aid profession, etc. deal with numbers and let them work on creating a standard that wont fail. I am 100% successful, my CI works. But that is nto what you want to hear, I know. So who is going to do the thankless task of collecting unbiased, totally ccurate, unmistakable data? And who will decide what to sue for the criteria? Oh, and how should it be interpreted? I know a young aldy who gained little from the current crop of HAs. Yet she did mot pass the criteria for a CI. Why? Because she was able to anticipate the sentence tests. She is in the education field and went by the context. You said, " If a person joins this list and only hears the wonderful positive experiences and " It will get better, I know it will " but never hears about people who do " just OK " they may be disappointed without preparation. If, on the other hand, there is a balance of " good, bad and in-between " then expectations might be more realistic and those who exceed them would feel an even greater sense of accomplishment. " This is where we flop. After all, we are not pros, we are just people trying to make the most of what we have. How many of us will write and say, " hell, I cant make it work for me like you guys do! Its not living up to my expectations! " And so on. Its that human nature. Dont think we can change that. If we could, it would surely paint a more balance picture, I agree. " If I lost an arm.... " Many do not truly know what they would do if.... On one list, there was a debate on " if I had a choice between sight and hearing, I would choose.... " Its pointless, really. We cannot know unless we face it. Just as its pointless to state that you would do nothing more about a lost arm than to seek reasonable accomodations. That may well be all you need. Many deaf people do that. You say that if you went deaf, you would have no problem adjusting because you are part of the deaf world. You might. But you dont know. No one knows. A person born deaf, or born blind, do not know anything else. There are blind people who would not consider regaining sifgt, just as some deaf people would not consider a CI/ There are poeple who never leave town because they dont know what lies beyond the borders. Some people talk about the joys of cooking the old fashioned way. Its fun! But ask a pioneer how much fun it was. Way different. Today we have SO many options at our disposal. When we reach the point of frustrations, we want to reach for what is there. I got frustrated. I got a CI. Its not perfect, its not meeting my expectations. But I just have not gotten there yet. I didnt know where my life was going pre-CI. But it was downhill. Now its uphill. Well, I dont know if I helped any. I believe tho that you would want to understand that what you read here is relative to the writer. And that what you read is from a personal view, and not that of a professional. By the way, seeking reasonable accomodation itself can and is a nightmare. Society just does not care unless it is forced to provide " reasonable accomodation " . It never ends. There are even opposing views within the disabled community on what is acceptable as a reasonable accomodation. Closed captioning for example is not and probably will never reach 100%. How frustrating to find a movie on TV, and discover its not captioned. Or, a blind person with a guide dog needing a cab and being told, no dog no dog! What of a wheelchair user who cant use the bathroom in a store because they never got around to upgrading, and he has to frantically wheel all the way across a parking lot because Mcs HAS to have those accesible restrooms. And he barely makes it. When we lose a part of our body, be it a limb or sense, we are at society's mercy. Its one thing to sit on the other side and think its possible, a totally different reality when we are the one facing it head on. Sigh. I had no idea how that soapbox got there. Anyway. *---* *---* *---* *---* *---* Sometimes one at a time is better than nothing at all. & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Jerome, Good point about choosing a lifestyle. I'm not sure if it's available in your country, but the AVR ImpaCT might be a good hearing aid to evaluate. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... RE: Brad Alice, I agree with the family dynamic changes that follow major hearing changes (in both directions). I have a different perspective than most hearing people because I do have a place in the Deaf community and can easily imagine a full life without hearing. Of course, I can't say that with 100% certainty since I still have my hearing, but since I know so many Deaf people who are not " missing " anything, I feel pretty good about that statement. That option is, of course, not open to everyone, and for someone who has progressed out of hearing, the CI is very likely the best solution. But I am concerned when distorted statistics like " 100% success " get repeated so often that the message begins to be, " Can't hear well, get a CI, can't hurt. " While I agree that the chances of improvement are probably better than not, without reliable independent sources of data, I don't feel comfortable joining the pep squad. At a convention recently I asked a few representatives from CI manufacturers about " less than expected " and " less than optimal " results and they all admitted that they really have no idea of how many people fall into these categories because the CI centers don't report those data. Even more disturbing was a CI recipient with only fair results who was being pressured by audiologists and other CI users to exaggerate how well they were doing, or at least not volunteer information about their less than expected results. As recently as this week I read of one member of this list actively seeking a CI and being told to " go for it " only to hear just a bit later that they have a profound loss and are wearing CIC's. There is no way that this person is optimally aided and in fact, their audiologist is initiating a BTE trial prior to making a determination. Many people were willing to encourage this person to move forward with a CI evaluation, yet no one asked anything about hearing aids. So I suppose I'm saying that I see the general theme of " CI's will always help you if... " strikes me very similar to the whole brand thing. Your recent request to omit brand information so as not to color a person's choice made a lot of sense. If a person joins this list and only hears the wonderful positive experiences and " It will get better, I know it will " but never hears about people who do " just OK " they may be disappointed without preparation. If, on the other hand, there is a balance of " good, bad and in-between " then expectations might be more realistic and those who exceed them would feel an even greater sense of accomplishment. By the way, if I lost an arm tomorrow, I doubt I'd seek help " in any form " but that's just me. I avoid medical and surgical interventions unless my life is at imminent peril. More than that, I have a lot of experience with people with a variety of disabilities in the " independent living " movement which, unlike the prevailing medical model of hearing loss (your ears are broken and therefore they - and you - need to be fixed) is full of people who accept their differences and live successful lives by finding reasonable accommodations and working the system rather than vice versa. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 It's not available here... Regards/ Jerome RE: Brad Alice, I agree with the family dynamic changes that follow major hearing changes (in both directions). I have a different perspective than most hearing people because I do have a place in the Deaf community and can easily imagine a full life without hearing. Of course, I can't say that with 100% certainty since I still have my hearing, but since I know so many Deaf people who are not " missing " anything, I feel pretty good about that statement. That option is, of course, not open to everyone, and for someone who has progressed out of hearing, the CI is very likely the best solution. But I am concerned when distorted statistics like " 100% success " get repeated so often that the message begins to be, " Can't hear well, get a CI, can't hurt. " While I agree that the chances of improvement are probably better than not, without reliable independent sources of data, I don't feel comfortable joining the pep squad. At a convention recently I asked a few representatives from CI manufacturers about " less than expected " and " less than optimal " results and they all admitted that they really have no idea of how many people fall into these categories because the CI centers don't report those data. Even more disturbing was a CI recipient with only fair results who was being pressured by audiologists and other CI users to exaggerate how well they were doing, or at least not volunteer information about their less than expected results. As recently as this week I read of one member of this list actively seeking a CI and being told to " go for it " only to hear just a bit later that they have a profound loss and are wearing CIC's. There is no way that this person is optimally aided and in fact, their audiologist is initiating a BTE trial prior to making a determination. Many people were willing to encourage this person to move forward with a CI evaluation, yet no one asked anything about hearing aids. So I suppose I'm saying that I see the general theme of " CI's will always help you if... " strikes me very similar to the whole brand thing. Your recent request to omit brand information so as not to color a person's choice made a lot of sense. If a person joins this list and only hears the wonderful positive experiences and " It will get better, I know it will " but never hears about people who do " just OK " they may be disappointed without preparation. If, on the other hand, there is a balance of " good, bad and in-between " then expectations might be more realistic and those who exceed them would feel an even greater sense of accomplishment. By the way, if I lost an arm tomorrow, I doubt I'd seek help " in any form " but that's just me. I avoid medical and surgical interventions unless my life is at imminent peril. More than that, I have a lot of experience with people with a variety of disabilities in the " independent living " movement which, unlike the prevailing medical model of hearing loss (your ears are broken and therefore they - and you - need to be fixed) is full of people who accept their differences and live successful lives by finding reasonable accommodations and working the system rather than vice versa. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 brad you make the statement that because you know so many deaf people you can easily imagine life without hearing that many deaf people feel like they are not missing out on anything when i was 19 i lost all hearing overnight because of my dad's support i picked myself up and moved on i went to Galaudett U ... became fluent in signing got married got jobs had kids took part in school and community affairs all while being deaf i never felt as if i was missing out on anything never thought being deaf was a big deal but ..... i lived in a strange world of denial since there was nothing i could do to change how i was then this denial allowed me to feel ok ... to accept without wishing or dreaming or more but the reality of being deaf is it limits a person and discriminates on so many levels you say that you don't hear about the people with CI who are not successful just like you don't hear from deaf people how many things in life they are not able to participate in because they can't hear how many times they denied a job or advancement because they are deaf if their car breaks down they are at the mercy of others to call for help if their child is sick calling a doc for information is a major ordeal asking for help in a store and not understanding you get treated as if you are stupid i don't know how many people were shocked to learn i drive a car and even asked if i learned to read yep even have my MA when i had my baby social workers were called in to talk to me asking how i plan to raise my child how humiliating and degrading simply because i am deaf when i wanted to adopt a child it was a major fight how can a deaf person safely raise a child it didn't matter that i had 3 children already and that these kids were doing great in school they could n't get pass this DEAF word it took years of fighting the system i could go on and on these are the realities that most deaf people do not talk about things that most normal people take for granted become a challenge for deaf people i am a mom to 6 kids 4 still at home i am a single mom who used to depend on my kids to answer phones and interpret at times now that they are getting older i don't want them to feel that they need to stay close to home or feel obligated to " caring " for me knowing there was a device that would allow me to be more apart of the world to be more apart of my kids life to be more independent was something i wanted when i stopped and honestly faced reality and did admit to limitations and discrimination that were there every day simply because i couldn't hear then getting a CI made sense as far as you being fine being deaf i guess would depend on how well you can live in denial susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 It's much worse here in Philippines... Telling the people that Starkey hearing aids can make deaf children speak, HOH people will have normal hearing. After a year your hearing get worse, it's your fault and no re-programming even for digital hearing aids, you need to buy a new one. Your hearing aid brokedown after the warranty period, your hearing aid will be declared not repairable, just buy a new one... Surf the net and tell Starkey audiologist that you found out Axent and Axent 2, and he will tell you that Axent and Axent 2 are still on trial, it's not reliable, and he don't want to make you guinea pig, so buy Sequel at the price of Axent... Complain to Starkey that the Starkey audiologist won't program your hearing aids and they will tell you to send the hearing aid to USA. Complain that you need to be physically present for the fine tuning, the Starkey audiologist will be told to program your hearing aid, however... The Starkey audiologist would want you to sign a waiver form that he will not be responsible for whatever outcome before programming the hearing aids... Exploitation of hearing disability... Regards/ Jerome Brad I have heard this from other audiologists as well. I recently heard of a parent of a child who IS benefiting from hearing aids (making gains in speech and language, has not " plateaued " yet) being pressured by a center to have the child implanted because " they'll need it sooner or later anyway. " Brad, I'd imagine this can happen anywhere. I know from my own experience dealing with hearing aids/audiologist, that a lot of audiologist are not in their profession to help their patients, but only there to sell them aids. In fact, I reported an audiologist to the State of Alabama a few years ago for his lack of honestly with me and for the horrible service he provided. He was placed on a probation status, where he certainly deserved to be. He has a doctorate in audiology, so of course, I was expecting his hearing aid center to be tops. The same does hold true on both sides of the issue...audiologist who have patients they fit for aids knowing a CI will help them, but telling the customer that a CI won't help them... and surgeon/implant centers who recommend a CI for a patients who benefit from aids. It's just a no win situation in a lot of cases. I don't want to beat a dead horse to death on this as I've seen issues progress to the point it gets sickening, but as in most siutations, there are always two sides on every story and not every CI center or audiologist is going to play fair. That's life. Dixie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Brad, I wasn't gonna get into this debate/conversation due to the fact that I really am on the outside looking in when it comes to the deaf/HOH. You see it is my son who has the hearing loss not I. For 18 months before he got his implant I knew what it was like to deal with and try to understand a child that couldn't talk/sign and who really couldn't tell you exactly what he wanted. My son has had the CI surgery and that was the hardest decision I have had to make for him. But now that I see he is enjoying the sounds of the hearing world and learning the signs at the same time I am glad I made this decision for him. I don't regret having done the surgery. What I can say though is I regret the time he spent wearing HA's that never gave him any benefit. For 18 months he was the crabbiest baby and mostly misunderstood for he could not tell what he really wanted. I ask many questions of these list groups due to the fact that I am currently trying to get my son a second implant. In his case (hearing loss secondary to meningitis) he may not be able to get one later in life if we wait. I just want to give my son the maximum hearing possibilities there is at this time. Because time is something we may not have later......... I just hope you see where and why I made this decision. And it was his ENT that mentioned him possibly being a candidate for the CI when he was 2 months of age but because we had to try the HA's first........we did. His Audie decided at 11 months that he would benefit more from the CI than from any HA's available now. I made the best decision I thought possible for my son. Just thought you would like to know what it was like from my side of the fence so to speak. Oh and one more thing my son now can understand spoken speech and has a small vocabulary... Tracie Austen's Mom implanted 11/03 activated 12/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 This is one paragraph to which I would like to reply. If there was a way that I could " fix " whatever was not working on my body, then surely I would rather do that then to have to demand anything from society. Society owes me nothing. I, however, have the obligation to be as productive a member of society as I can. In a message dated 4/26/2004 6:02:44 PM Eastern Standard Time, bingrao@... writes: Rather than follow the advice of the medical " fix it (you) " model, they live their lives not in denial, but with full acceptance and awareness of their disabilities and what they need to do (and what to demand from society) so that despite the ignorance and prejudice of other, they live full and successful and happy lives. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 > I agree with the family dynamic changes that follow major hearing > changes (in both directions). I have a different perspective than most > hearing people because I do have a place in the Deaf community and can > easily imagine a full life without hearing. I can say this with almost 100% certainty: you don't have a CLUE what it's like to be deaf. I don't care how much you are in the deaf community, until you wake up one morning and discover that you can no longer hear, there is NO WAY ON EARTH to know what it's like. Even partial hearing loss, hearing speech sounds that no longer generally form into words, and the frustration that goes with it is something that a hearing person can't fully comprehend. That's what happend to me. I have deaf relatives and I've known other deaf and severely hard-of-hearing people. What I imagined their lives were like- what it was like to be deaf- was a heck of a lot different from what I found when I arrived in deaf world. It wasn't the end of the world and I can think of far worse things that could happen. It wasn't where I belonged.I learned to speechread and sign and did my absolute best to adapt, but again, it wasn't a place where I belonged. >Of course, I can't say that > with 100% certainty since I still have my hearing, but since I know so > many Deaf people who are not " missing " anything, I feel pretty good > about that statement. Should you ever experience severe hearing loss (and I pray you don't) please review that last statement and report back. I think you'll find that a lot more is missing that you would ever have imagined. I did about 2 years worth of talking to CI users and did other research before deciding to get the device implanted. I met MANY who didn't have newsworthy success stories. The road to hearing with a CI is long and uncertain, and I feel fortunate that mine has worked exactly as advertised. To say the least, I've been surprised how well it's worked. Is there something wrong with encouraging someone? Whether it is a prosthetic leg, or a prosthetic ear, time and practice CAN make things better and being encouraged be peers certainly doesn't hurt!! As far as independent living...we have a adopted daughter who is a amputee. Looking at it from you way of thinking...I'm guessing we shouldn't get her a prosthetic leg? It'd be a shame to see her miss running on the cross country team at her school, but I guess she could live " naturally " and still be walking around on her knees like she was when we adopted her. > By the way, if I lost an arm tomorrow, I doubt I'd seek help " in >any > form " but that's just me. Then I sincerely hope you don't bleed to death if it happens. I've met several people who lost arms and legs due to injury and more than one has come close to death due to blood loss. I'm guessing your " in any form " refers to a prosthetic arm? You're certainly entitled to your opinion, and so am I: You are totally clueless. -Jeff late deafened (total communication) Clarion 90K + Auria + Hi-Res 12/03 (...and it works great!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 I have not been following this list in the past two weeks or so due to being extremely busy. However, I picked it up today and caught the thread of Brad's questions about--in a nutshell--ethical issues in cochlear implantation. He made a rather sweeping remark that most deaf people are fine the way they are and feel they don't need to hear. In line with some of the posts I have seen tonight on the list, that has NOT been my observation here in the DC area. I have noticed many members of the deaf community here getting CIs simply because they wanted to be able to HEAR, to be able to talk to their neighbors, children, grandchildren, listen to music, feel safer. They have many reasons for wanting a CI, even if often NOT for understanding spoken English (which was MY main reason for getting one). Deaf people don't like not being able to hear, but at the same time they don't like to admit that. They try to put a positive spin on what is in actuality a major, major handicap, while trading stories about job, family, and other problems that are directly related to their lack of hearing. Also, I have noticed that among members of the deaf world who do not have an implant, there are many misunderstandings of what a CI does and can do, and how it works. I am always concerned when a HEARING person tries to tell us, who have been deaf all or most of our lives what to think and how we should feel about various issues that affect us. I am far from alone in this sentiment. It reminds me of all the horror stories I have heard from deaf people about the lies interpreters have told them about CIs and other matters. A couple years ago an interpreter (who was not interpreting but sitting in the audience near me) queried me about my CI and expressed astonishment about how well I was doing with it. She alleged that they didn't work very well for most people. Like any other technology, there are always debates swirling around cochlear implants, unforeseen issues that surface, rough spots to be ironed out. Cochlear implant technology has improved by leaps and bounds, and no group has impressed me more than children who were implanted very early in life and learned to speak and listen through the Auditory Verbal approach. These kids have the potential to be more fully part of society than deaf people in my generation had. As for the claim that implant teams urge CIs on people who can benefit adequately from hearing aids, those professionals would be in the minority. The vast majority of CI team members are not guilty of this. In fact, I am seeing too often people who genuinely can no longer discriminate speech with hearing aids being forced to wait for an available appointment because CI centers are so busy, short-staffed, and under-funded. Mardie Younglof Clarion 1.2 and Platinum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Brad because you know deaf people and because you know asl you feel that you would be ok if you couldn't hear you say that many deaf people are aware and accept their limitations and i agree i know thousands of deaf people who live full rich lives i too found creative ways to deal with my deafens s my limitations i have never felt i have a handicapp being deaf way just another part of me like my blue eyes but being deaf, living deaf sharing with other deaf has afforded me a far deeper and clearer understanding of just how deaf people really feel i have talked to so many deaf people who share their childhood memories of feeling isolated, being made fun of, feeling left out i have heard the endless stories of kids trying to learn to talk and how awful they felt .... struggling so hard to make sounds that others won't understand anyway although most deaf kids don't say how much they are aware of what they can't do they do remember these feelings years later wanting to be able to use the phone like their brother or being able to talk to other kids in the park or wanting to hear birds or a cat purr these are stories from real honest to god well aware and accepting deaf people you will probably never hear these stories you will only see the deaf pride no deaf person opens their soul to someone who is so different someone who hears you talk about avoiding these quick fixes yet you advocate using hearing aids aren't hearing aids a quick fix too as a mom of three kids with disabilities i would go to the end of the earth to help my child be as much a part of everything in this world my kids have needed surgery to correct deformed bones so they might walk one day or eye surgery so they might see i want for my children to know no limits if my child was struggling to understand what he hears why would i not want to help him? why would i not want to give him a way in which hearing would come easy and natural not by lessons and guessing why would i want to limit his world why would i want my son to miss out on so many of life's pleasures and riches i couldn't or wouldn't because i have lived this and know really know unlike others susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Well said Dixie. We all (consumers and providers) have a lot of work to do in terms of tightening up the system for the protection and benefit al all concerned. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... Brad I have heard this from other audiologists as well. I recently heard of a parent of a child who IS benefiting from hearing aids (making gains in speech and language, has not " plateaued " yet) being pressured by a center to have the child implanted because " they'll need it sooner or later anyway. " Brad, I'd imagine this can happen anywhere. I know from my own experience dealing with hearing aids/audiologist, that a lot of audiologist are not in their profession to help their patients, but only there to sell them aids. In fact, I reported an audiologist to the State of Alabama a few years ago for his lack of honestly with me and for the horrible service he provided. He was placed on a probation status, where he certainly deserved to be. He has a doctorate in audiology, so of course, I was expecting his hearing aid center to be tops. The same does hold true on both sides of the issue...audiologist who have patients they fit for aids knowing a CI will help them, but telling the customer that a CI won't help them... and surgeon/implant centers who recommend a CI for a patients who benefit from aids. It's just a no win situation in a lot of cases. I don't want to beat a dead horse to death on this as I've seen issues progress to the point it gets sickening, but as in most siutations, there are always two sides on every story and not every CI center or audiologist is going to play fair. That's life. Dixie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 , I certainly can understand your post and respect your feelings and the choice you made regarding the CI. I do hear of the limitations of being Deaf, but I also hear of the ways that many d/Deaf people live and work around the limitations you talk about. I know many who appear to be in denial, but I also know many, many who are NOT in denial. They openly (to me anyway) recognize and admit the limitations of their deafness, but rather than wishing or looking for ways to mitigate it, they find alternatives that work for them. Is it " harder " than being hearing? Of course, but it is also " harder " to be anything other than a White Male Republican in America. I'm not trying to minimize the isolation and discrimination you talk about, but I'm saying that being deaf isn't the only cause for having a hard life. Lots of the people I know have multiple and severe disabilities that significantly limit their function in the eyes of society and the medical community. Rather than follow the advice of the medical " fix it (you) " model, they live their lives not in denial, but with full acceptance and awareness of their disabilities and what they need to do (and what to demand from society) so that despite the ignorance and prejudice of other, they live full and successful and happy lives. They and I are not suggesting that this is possible for everyone, I'm just putting it out there. I know that the majority of audiologists have no awareness of this population and therefore operate out of the medical model. As one who can see, appreciate and respect both sides, I try to offer my patients the benefit of real options, not shades of the same single " choice. " I would not be so foolish to say that deaf people are not discriminated against, of course they are. But so are people with any level of hearing loss, even mild to moderate losses, which, to my understanding, is where the majority of " average " CI users end up. The level of discrimination may be different, but it is still there. So yet again, I am not questioning anyone's choices or the reasons they made those choices *for themselves*. I am also not about telling anyone they are in denial or not. That is a personal journey that each of us needs to make for ourselves without undue pressure or influence from others. ____________________________________________ Best Regards, Brad Ingrao, M.S.Ed. CCC-A, FAAA Editor EDEN - The Electronic Deaf Education Network www.bradingrao.com e-mail: info@... alpha pager: 5089046238@... (130 char) Re: Brad brad you make the statement that because you know so many deaf people you can easily imagine life without hearing that many deaf people feel like they are not missing out on anything when i was 19 i lost all hearing overnight because of my dad's support i picked myself up and moved on i went to Galaudett U ... became fluent in signing got married got jobs had kids took part in school and community affairs all while being deaf i never felt as if i was missing out on anything never thought being deaf was a big deal but ..... i lived in a strange world of denial since there was nothing i could do to change how i was then this denial allowed me to feel ok ... to accept without wishing or dreaming or more but the reality of being deaf is it limits a person and discriminates on so many levels you say that you don't hear about the people with CI who are not successful just like you don't hear from deaf people how many things in life they are not able to participate in because they can't hear how many times they denied a job or advancement because they are deaf if their car breaks down they are at the mercy of others to call for help if their child is sick calling a doc for information is a major ordeal asking for help in a store and not understanding you get treated as if you are stupid i don't know how many people were shocked to learn i drive a car and even asked if i learned to read yep even have my MA when i had my baby social workers were called in to talk to me asking how i plan to raise my child how humiliating and degrading simply because i am deaf when i wanted to adopt a child it was a major fight how can a deaf person safely raise a child it didn't matter that i had 3 children already and that these kids were doing great in school they could n't get pass this DEAF word it took years of fighting the system i could go on and on these are the realities that most deaf people do not talk about things that most normal people take for granted become a challenge for deaf people i am a mom to 6 kids 4 still at home i am a single mom who used to depend on my kids to answer phones and interpret at times now that they are getting older i don't want them to feel that they need to stay close to home or feel obligated to " caring " for me knowing there was a device that would allow me to be more apart of the world to be more apart of my kids life to be more independent was something i wanted when i stopped and honestly faced reality and did admit to limitations and discrimination that were there every day simply because i couldn't hear then getting a CI made sense as far as you being fine being deaf i guess would depend on how well you can live in denial susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Brad, Do you view all " medical procedures " such as the CI or prosthetic limbs as " Fix Its " ? Isnt it part of our nature to seek the " best " (best meaning best options for oneself) that can be used to mitigate whatever it is? You say that " many audiologists have no awareness " . You also say that you think you can adapt as a deaf person if that should fall upon you. Find out. Plug your ears up for a week, two weeks, 24/7. You probably already know ASL. But do not prepare for this ahead of time. Do it then seek out the reasonable accomodations. TTY. Visual signalers. Closed captioning. Go shopping at stores you have not been to. Plan trips by air. Go to a party of people you do not know. We all know what we would do if..... But when reality does strike, what happens. We go into panic mode. Why? Because we also think, " It will not happen to me " . People who want to go to work for Guide Dogs of the Blind and train guide dogs MUST walk in our shoes for 10 days. I imagine many wash out. They come to class (the real class, with blind students who are training with their guide dogs) and put on a blindfold which stays on 24/7 for 10 full days. After 10 days, they probably only want to go home and recover for a week. They do learn empathy for the blind. The only difference is that they KNOW its only temperorary. We've all heard it on the news. City Hall goes blind deaf and confined to wheelchairs for a day. Bleah. Nonsense. They think its fun, its only for a day, they get to drive home and forget what they did. Many many people with disabilities, happy lives or not, FACE barriers 24/7. You have to LIVE that to appreciate the reality. Some obstacles are so damn inhumane as to defy xommon sense. Like , when her baby was born, was visited by social workers. A blind couple, when their baby was born, had that baby snatched as soon as it was born because social workers could not fathom the fact that these were human beings who just had a baby. No, they were blind, how in tarnation can blind people raise a family. Oh no these are not isolated cases, not by any stretch of the imagination. How far should one go in mitigating their situation? Should " Fix It " always be the last resort? That is not practical. A missing limb is a missing limb. Remember back on the 80s when a certain eye corrective procedure became popular and people threw away eyeglasses? How about a procedura done on women's feet to allow them to wear high heels? Now that is going too far isnt it. So, where to draw the line? Would you like to define the line? You wont be popular, I promise you. We need to have the options available, and we need to exercise our freedom of choice....based on what we learn of the options. Should we only allow procedures that have a HIGH probability of success? If that is the case, people like Alice would never be able to exercise their freedom of choice. Maybe the standards do need work. But as long as we have people in the equation, we are going to see interpretations that others may disagree with. And sadly, we will always see those who take advantage of us. *---* *---* *---* *---* *---* You can say any foolish thing to a dog, and the dog will give you a look that says, 'Wow, you're right! I never would've thought of that!' -- Dave Barry & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
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