Added: 2 years ago
From: pdurr
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  • Hi,

    My son has a CI (from Cochlear, not AB) and he's doing well with it, BUT like any machines, I expect CI to wear down in the future. When we first started the candidacy process for his getting CI last year, the audiologists refused to offer one CI company (El-Med) and they said that that company had device failures and were working on them. Instead we were offered to pick one of two CI's--Cochlear and AB. We picked Cochlear due to its small no. of device failures compared to AB and El-Med.

  • At least the audiologist was honest about El-Med's problem. I read enough and discussed with other people before making the decision about which brand of CI would work. It's something that my son wanted for a long time... but like everything that is mechanical, we are prepared for the potential problems if they ever arise. Sometimes lawsuits are good for businesses... to help improve the quality and to pose less damages to the patients/customers.

  • Hi Karen

    Im really glad that you researched the different CIs and also got some advise re: one co.

    You are right about mechanical things breaking down. Everyday we learn something new. Ford Pintos with their faulty gas line, tobacco kills, breast imlants can leak, asbestos, radiation exposure, etc. Often these things were uncovered via grassroot groups advocating for investigations

    wonder do u know anything about BPA - is any part of COCHLEAR internal CI parts made of BPA?

    thanks

    peace

    p

  • Hi,

    Yes I have heard about BPA (the chemical) and that some people are extra sensitive to it. To be honest, it was not in my head when we researched the CIs. But then we do absorb many toxins through the environment (if only the organic foods are cheaper, that we do not need to rely on fossil fuels, etc...)

    Yes, I believe it's present in CIs. But no, I do not think about it.

  • re: organic food - yes this is why we are part of a farm cooperative - not only do we get to part of the growing process and see and get dirty with the food we are growing but we also know its safe and are supporting organic farming.

    re: BPA and CI - i understand your choice. Wondering if you have any interest in signing the petition for a more thorough investigation of CIs. Goal is for parents not to have to worry and search but for ALL of us to have the FACTS. full disclosure

    peace

    patti

  • I think that it's good for asking FDA to do more research on CI, release success/failure statistics, etc. It'll take FOREVER. As for me signing the petition, I will have no problem with it, but I don't agree with the AFA because I feel the word "audism" needs to be defined more and more and once it's acknowledged its place in the legal system, then I will sign the petition. Meanwhile...as long as it's used as a weapon in the Deaf community... *shrug*

    Peace, K.

  • @ Mayes2010

    hmmm

    a lot of trials were fought in court about racism before the term was legally recognized

    dont really follow your thinking here

    re: weapon in the Deaf community - the most dangerous one appears to be ignorance, misinformation and apathy.

    Do hope you will undertake whatever approach you feel is best to get more facts about CI - its important.

    Peace

    Patti

  • Yes, I have seen ignorance, apathy, etc... especially in the state of Indiana, from the Department of Health toward differently abled people. One of the reasons why we are moving out of Indiana... I don't want my kids to be exposed to it any longer. I believe that the word audism still needs to be defined more and more so that it won't be often used as a weapon against other Deaf people in the Deaf community. con't....

  • con't.. My son has a CI, making me a traitor. A child abuser because I supported my kid's desire to talk. All the labeling has left a bitter aftertaste in my mouth. I strongly believe in respect. I like Ella, Barb Digi, DeafChip, Carl S., you, etc. And I also like Barry, Mike McConnell, Paotie, etc. If we meet in person, you'd find me a harmless, quiet, average person who likes reading, spending time with friends, etc. I am just wary.

  • HI Karen

    Im sorry about the audism or if you prefer oppression you have experienced in Indiana. I hope your move will bring you what you are seeking. While folks are just beginning to learn what audism means and how to NAME the experience appropriately there are a few who may be misusing it. There is also a backlash that is totally misrepresenting things and spreading myths and misinformation.

    cont below

  • I have seen parents who have chosen CI called child abusers - i do NOT support that.

    I have seen parents who have chosen not to implant their child called child abusers - i do NOT support that.

    i support finding the truth and the TRUE facts.

    We need to know the facts about CI especially in light of your son considering a 2nd.

    i know you are a good and caring mom just as i know the parents who choose not to get their kids implanted are good and caring too

    look forward to meeting u soon

    peace p

  • There is a Even there is an atmosphere... "don't bite hand that feeds you" at ISD which receives funding from the state (100% state run school.) So I chose the different path and it has been quite an experience for me. As my kids get older, I face the question of what I want for them: to become more aware of their places in the society as Deaf people so Rochester, NY appears to be the ideal place.

  • think many have faced your dilemma sadly - it is not just Deaf parents who at times get lulled. Many parents dont have the resources or choices to move or to fight the system etc. Im glad u tried but sorry it did not satisfy you. I love how you wrote " become more aware of their places in society as Deaf people" we all gotta find our place and our center and once we do we usually find our feet soon after.

    Look me up in Rochester - gonna go walk my dog now

    wishes for a smooth journey

    peace

    p

  • Yup. Experiencing oppression (for me, it feels comfortable to use "oppression") has impacted me a lot in the last four years, experiencing and observing how the state government treated differently abled people, especially in the education area. It quickly became a question for me to want to fight for my kids or to become one of the Deaf parents who allow themselves to be lulled into apathy, choosing socializing over concerning themselves about deaf education. cont...

  • Excellent excellent that you boldly pointed out how AGBell embraces AB. I interpret it to mean AGBell does NOT care about the suffering or injustices being imposed on Seaf cildren or adults.

  • i was R E A L L Y surprised to see Advanced Bionics on AG Bell Assoc Homepage top banner.

    The live link into AB shows a very attractive, colorful, and happy website with no mention the recall of their implants or the lawsuit and fines.

    If a Deaf organization had Viables still on its banner or perhaps even soon purple - folks would go NUTS and demand accountablility and that it be removed

    but no one seems to care that AG Bell is advertising a CI co. that violated FDA regulations

    Peace

    patti

  • Patty , may l ask u a big favor not only for me but for the deaf communities , can u put this vlog on dvtv cuz theres someone out there that need to know about this pretty plz , l appricated it if u do but if u cant then l will understand this , have a good day

  • Hi Goatmann

    thanks for asking - no i cant put it up in DVTV because DVTV refuses to recognize audism in its rules so I have been in boycott of DVTV.

    You can always vlog at DVTV and give this url address

    If im wrong and now DVTV is acknowledging audism just as it does racism, sexism, heterosexualism - let me know

    Many thanks

    peace

    patti

  • okay l will try my best as soon l fix my other computer , right now l am on my laptop so l do not have handy camera software program on here so give me some time then will try my best and also have to think what should l say in vlog and share the url link with anyone else who is interesting readin the website thanks for your permission hun , u have a good day

  • Hi GoatMann

    thank you for caring so much about this. Don't stress yourself. Life is short.

    Much peace

    patti

  • DVTV promotes hate crime: audism.

  • hi carl

    i dont know if it promotes it as im boycotting DVTV but its refusal to acknowledge audism in its rules (despite a promise that it would be doing so) communicates that it values and respects folks of different races, genders, age, religion and sexual orientation, but does not do the same for Deaf ASL folks

    it is VERY odd for a Deaf website and aggregator (DR) to be so loyal to this omission

    can't figure it out - part of the hate crime spectrum - i truly hope not

    peace

    patti

  • thanks all for your comments

    please help spread the news for folks who might have these types of CI and have experienced problems

    peace

    patti

  • learn something new. will keep in my mind if someone needs an information. thanks for inform.

  • Thanks for bring that up that is very important

  • Hi Pdurr, thank you for sharing this information and keep it up! Smile

  • Hiya Patty , been long time , l am really glad that u brought this up , l appreciated it , thanks for sharing with us and plz keep update if u hear any more lawsuits or other info thanks

  • Thank you for informing us!

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