The hearing and cochlear implant debate! Share your opinion!

[dreama]

How long did it take before you decided to get another dog?

I got Jilli the day after Bruce retired. My dad took him back home with him and I went to train at guide dog association the following day with Jilli. I felt really bad about having to retire him but he had become very over protective. If someone aproached me he was prone to be fierce so that made it hard to keep him. I still felt really guilty about it though. I felt I was trading him in for a newer model. This is one of the reasons I've decided to keep Jilli till the end.

Bruce had to be retired at 9 and a half due to challanging behavior. He died age 13 with breathing and heart problems. I was at my dad's at the time. We both went to the vet with Bruce and stayed with him till the very end. It was very sad.

 

[dreama]

After I lost my hearing in 1995, I felt extremely isolated.

I can understand. I missed using a Monocular when my sight grew too bad for that and now I can't see anything at all in most lighting conditions. However this is a phase that can be overcome given the right support: In your case tactile sign language and help to acheive a better mindset by going to convention and meeting deafblind who have coped with their loss.

I haven't had that yet. I pay someone to teach me tactile signing every week. I'm also getting mobility lessons now. Also help in the kitchen, and now they are looking into communicator guides for me. I do have the internet though and I also have my book and also my furry friends.

But most importantly of all is to get into the right mindset to deal with deafblindness. To be able to think possitively of what you still do have instead of what you don't.

I can understand why you wanted the CI for personal safety. I'd like a tactaid 7 for that reason as my tactaid's not working but unfortunately I'm not sure if I'll get it. Tacile aids will let me know about environmental noises through vibration. I'm still waiting for my next apointment. See what happens then.

 

[dreama]

Thanks for the truth. I am hoping that there are a better way to understand what was being said than CI. Something that doesn't required years of therapy.

Sadly it seems in people's eagernes to push CI's alternatives are being pushed asside and going out of buisness. I don't think CI's shouldn't be used. They just need to be promoted as assistive tecnology along side ALL other forms of assistive tecnology. NOT a cure for deafness. Their also needs to be money made available to keep devices for deafblind people going since our numbers are so small that we cannot keep things from going out of buisness. We just don't have the consumer power for that.

 

[Hear Again]

dreama,

What is a communicator guide? Is that the same thing as what we call an SSP here in the U.S.?

 

[Hear Again]

dreama,

How do you communicate with the person who helps you with mobility? Do they trace block letters into your hand?

 

[dreama]

dreama,

How do you communicate with the person who helps you with mobility? Do they trace block letters into your hand?

No, He knows the deafblind manual.

 

[Hear Again]

No, He knows the deafblind manual.

What kind of alternative travel techniques are you learning?

For example, how do you cross the street? I used a communication card or an endless loop tape which played a recording that said
"I am deaf and blind. Please tap me on the shoulder when it is safe to cross."

 

[dreama]

dreama,

What is a communicator guide? Is that the same thing as what we call an SSP here in the U.S.?

What is an SSP?

A communicator guide is someone who takes you to places and interprs for you. They are also called intervenors, guide helps or guide interpreters.

 

[dreama]

What kind of alternative travel techniques are you learning?

For example, how do you cross the street? I used a communication card or an endless loop tape which played a recording that said
"I am deaf and blind. Please tap me on the shoulder when it is safe to cross."

He teaches me how to get from A to B basically. I still get lost occasionally but I'm starting to learn how to back track if I'm not in the right place.

Yes for road crossings I have a card that says "I am deafblind. I would like to cross the road"

I also hold up a card to say "I am deafblind I would like the 60 bus" and another that says "I am deafblind. I would like to get off at the terminus at the bottom of crainspark road".

I find cards very useful.

 

[Hear Again]

I also hold up a card to say "I am deafblind I would like the 60 bus" and another that says "I am deafblind. I would like to get off at the terminus at the bottom of crainspark road".

Before I received CIs or had a BrailleNote GPS, I also used communication cards for crossing the street as well as on the bus.

My cards would say "I am deaf and blind. Please tap me on the shoulder when we reach Smith Street." It worked great because I didn't have to worry about being unable to hear the driver announce my stop.

One final question. Do you use a longer cane similar to the NFB? I prefer longer canes myself, but have difficulty using them due to my CTS.

 

[Hear Again]

What is an SSP?

A communicator guide is someone who takes you to places and interprs for you. They are also called intervenors, guide helps or guide interpreters.

SSP stands for Service Support Provider. They do the same thing
an intervenor and communication guide does. (facilitate communication, guide a DBP, help a DBP run errands, etc.)

 

[Pinky]

I didn't say CI will make me hearing person. I am still deaf. CI can make me HOH instead of hearing. I understand what you mean. That's good for you not to be boring without computer. HA and CI are the same. Glasses won't problem the solve either.

The technology will change every years.

I know what you are saying but CI's don't make you hearing. They make you Hard of hearing. They won't solve all your problems. I also had problems when I was HOH. In fact I had more problems towards the end because I felt presurized to wear my HA despite recruitment so losing my hearing actually came as a releif.

I am completely deaf. I am also completely blind in most lighting conditions. If my computer breaks down or my electricity is cut off yes I do feel a little lonely but other then that no.

 

[deafdyke]

I am still deaf. CI can make me HOH instead of hearing.

I think the CI=hearing thing came up b/c the "experts" thought that hoh people are more "hearing" then deaf. While I can hear with my aids, I am NOT hearing by a MILE.

 

[Hear Again]

I think the CI=hearing thing came up b/c the "experts" thought that hoh people are more "hearing" then deaf. While I can hear with my aids, I am NOT hearing by a MILE.

I prefer to say that I'm a deafblind person who can hear with CIs.

 

[LuciaDisturbed]

I went to an Audiologist recently hoping to obtain a tactaid7. I was even willing to fund it myself. I just needed an Audiologist to purchase it since they don't sell directly to the public.
Anyway they recomended a CI instead. Since a Tactaid7 is much cheaper, I can't understand why. I don't want a CI because I like being profoundly deaf. The tactaid would just alert me to environmental noise through tactile means.

I wonder how a Tactaid would work. You just feel the vibrations and can tell what they are? That seems hard to do. And it wouldn't let you understand speech, right? I'm sorry, I am only wondering as I have never heard of a Tactaid and therefore do not know the benefits and the cons of it. It just seems like the benefits of the Tactaid is limited to environmental sounds? Could you explain it to me?

 

[LuciaDisturbed]

I'm sorry, but that audi was wrong for telling you that. As you already know, prelingually Deaf adults can benefit from a CI even if they aren't oral. After all, the purpose of a CI is to hear -- not to speak. If that audi would have said the same thing to me, I would have been offended too.

That's right. I am a prelingually Deaf adult and I have been implanted with the Nucleus Freedom for almost 3 years, it will be 3 years this upcoming October. I am 28. It's been a huge benefit to me even though I cannot understand speech. I can hear so many environmental sounds, and I get to enjoy music which was something I have always wanted to experience ever since I was a little tot. I no longer feel left out when I am in a car with a bunch of other HOH or hearing friends and they play the music in the car. I can now join in with them and enjoy instead of just looking out the window and wondering how the music would sound like if I could hear. My fiance is Deaf but can hear with his hearing aids and he blasts the music in his truck, and I get to enjoy it, I no longer feel left out anymore. It feels good. I would like to at least try to learn speech but I need someone who specializes in speech therapy with CIers, not someone who does general speech therapy or someone who does speech therapy with patients who had accidents where they lost the ability to speak or forgot how to speak and have to re-learn speech. They have no idea how CIs works, I need someone who knows how CIs work, because we hear sounds differently and therefore they need to teach us differently. It will be ok if I find I can't learn speech, I will know that I have at least tried.

 

[LuciaDisturbed]

I just feel tired of that anticipation that the next time I visit the audi, I would have to waste 10 to 20 mins of my time explaining why I am not interested in a CI. After going thru that several times, it gets tiresome and annoying. I just want to be able to visit an audi for what I need and leave.

Next time you see the audiologist and she has your file in her hand, snatch it out of her hand, pull out a huge red marker and write "NO CIs!!!" all over the file. Problem solved. You have the right to do that, it's your file.

 

[LuciaDisturbed]

I hate the woman with a passion. She told me at our first visit, when Miss Kat was 18 months old, that if she didn't learn to talk it was because I was a lazy mother. She hates that we use ASL and judges us for her school placement. She said that since Miss Kat is in a bi-bi school and uses ASL she couldn't get a CI. That she "only implants kids who will become 100% oral, and (we) have shown that she won't".

That is WAY worse! We walked out and never went back. We have also had several families complain as well and move to other audiologists. Hopefully she will at least stop seeing kids.

I would have told her to go fuck herself. You are NOT a lazy mother. She's just being a bitch who's judgemental and is still stuck in the stone age.

 

[LuciaDisturbed]

Since I'm deaf and blind, I expect sighted people to put all business signs in Braille and to have all restaurant menus in accessible format.

I also expect all of my grocery items labeled in Braille so I can read the ingredient content and know what I'm taking out of the cupboard or refrigerator.

If that's not possible, please give me my own Anne Sullivan who can help me run errands since I can't drive and the cost of taking public transportation is expensive. <sarcastic mode off>

I recently noticed that the Band-Aid company has began to put braille on some of its packagings. The Band-Aids I have currently has braille on it (I wasn't paying attention and grabbed it and when I got home my fiance teased me and said "are you blind now?" to which I went "huh?" and he showed me the braille on the package. I thought that was cool. They haven't put it on everything yet, though.

 

[LuciaDisturbed]

Going blind sounds scary, especially when you can't hear anything already. I hope I never lose my sight. I'm an artist and if I lost my sight I don't know what I would do.