About CI activating videos...

[Ivana Marinac]

Controverse:

http://www.thewire.com/politics/2014/03/why-you-shouldnt-share-those-emotional-deaf-person-hears-for-the-first-time-videos/359850/#disqus_thread

What do you think?

[Sandy]

This is a lot of food for thought Ivana. The article itself does make a good point in that the videos (or a number of the ones I saw) did not explain the journey to obtaining the CI. I had a friend who commented after I had mine that I heard less after my implant. Until I explained to her the process, she was expecting an "instant cure". I think getting the implant is very much a personal choice and for myself, even though I can now hear, I am still deaf at the end of the day when I take the processor off to go to sleep. I think we have the best of both worlds and it should be noted somewhere that it is not easy, it's "a marathon, not a sprint".

I wonder if the people who denounce the CI have ever spent time talking with a person who has been the recipient of one to better understand the choice that was made.

[Kara of Canada]

I completely agree with you both. When I was told I was eligible I wanted to know everything about the journey. The only videos I found were from people who talked about how wonderful they are. I wanted to know about the surgery how it felt and what I could expect. Even though it is very individual. I couldn't get that information no one wanted to talk about it. Thankfully for me I found this forum thanks to hadron. He was in the AB forum he directed me here. I found more info here than anywhere else. Everyone was willing to share. Thank you all. There is much education needed.

[Ivana Marinac]

Sandy, there was a post back in the old days about CI controverse in the Deaf community, but my intention is not to discuss that point - it's an individual choice.
What I want to point out is that a writer of this story isolate particularly this kind of story as immoral. I set myself a question - why? Because the writer has experience in this particular topic? Family history?

Humanity is proned to simplify all processes - I would compare it as an average movie where it is impossible to connect everything what is important to be said and stressed out.
YT short movie can even less do within this field. Intentions of the movie makers are like any other - each has its own perspectives to achieve.

Also, the ancient wisdom says: The thruth is in the eyes of the observers.
So, he or she decides to think what they want about particular subject. If they are interested, they will ask more; if not - they won't.

I am always pro-voice for individual decision - the most important decision in my life I had to make by myself: to enroll a medical school and after that medical specialty, to decide whether I will or will not go to a certain surgeries which was far from medical necessity - I am not talking about the BB. Each one of us had to make choices like we do in the other fields of our lives. This is what it should be stressed out.

At the end, there is a particular type of hearing videos which I find seductive - the exact moment of the first switch on where people are asked: Do you hear better?
This is ridiculous where business propaganda work against certain product, implant in this case because (re)habilitation is the process not - a photo of exact moment. Although they should understand this is contra-productive, they are first to forget, or even worse - they don't understand or even don't care.
When I have presentations about my BB, I choose next approach: I never talk about my personal satisfaction which is totally subjective; I present my audiological results and let the ithers, for instance to my mentor to speak what he or our colleagues observed - how my implant changed my life perspective and functioning.

So, this is my approach: an individual testimony not sort of crusader's conquest.

[Kara of Canada]

Well Ivana I still think that it is ok to be passionate about cochlear implants and BB and other implantable devices. We, yes even us in this group should really be passionate and speak out about what we know. To make others aware about implantation. We need to educate as we therecipients are the best for this. So keep on doing everything that you're doing and tell everyone you know about it. Who knows what is to become of it. Maybe Med El will want us to make our own video!! Or help them to create one.

[Ivana Marinac]

Kara, I describe it as my way because I have "special" obligations as a member of the society - I am a doctor, otorhinolaryngologist; first thing what people would or actually did say: it's your professional interest. That's why I have to have an individual approach. But this doesn't mean that I am against positive testimonies - I am just against what I described above: videos where people are asked to testify before actual process of rehabilitation even started. As a person in the field I have been speaking with people who are actually star patients, but also with those who didn't succeed to reach that level. Promising to all people star results without all obstacles of (re)habilitation can be dangerous.

When I mentioned crusader's approach this wasn't directed in your, Adam's, Mary Beth's, Sandy's or any other patient's way and pardon me if you understand it in that direction. I believe I've stated very clearly in what way I meant. 

As Sandy said, we are still deaf or hard of hearing at the end of the day, but of course - it's hard to advertise people efforts, results are more seductive. 

[Kara of Canada]

I completely agree with you! Just that I wanted to make sure that I mentioned that passion is a very important aspect of the whole idea or area with which we are speaking. I intend to advocate for implants and for Med-El and the Hearpeers forum to those who wish to hear.

[Kara of Canada]

And I am as deaf as a doornail!!

[Ivana Marinac]

I completely agree with you! Just that I wanted to make sure that I mentioned that passion is a very important aspect of the whole idea or area with which we are speaking. I intend to advocate for implants and for Med-El and the Hearpeers forum to those who wish to hear.

 

That is not questionable - there is nothing wrong with passion either with testifying your own results. That's what we should be proud on actually. And that's why I put a primary question: why this person is bothered if someone wish to share its joy? What is happening behind the scene is also part of the story but it's not possible to answer all questions in a video link which lasts for few minutes.

If I would believe this is not right thing, I wouldn't be here in a first place; not to mentioning that I have found bunch of extraordinary people who cheered me up also when I needed it. Fear of failure is equal no matter how much do you know about subject although in my case, being second person in the world to have this kind of operation within my condition - to have this kind of support, means a lot. When we my mentor and I had first lecture we, actually put all supportive messages from the members of this forum to show our colleagues how much it meant to me. Before the surgery, but also before the activation. Med-EL as a company also helped tremendously. In these situations, I would be more than glad to help them to advertise an implant which really works, changes people's lives.

[Mary Beth]

I believe in people's right to choose what they share about their experiences and in whichever format/media they wish. It's important to also get the message out there that hearing speech at activation is not the norm. Many people who do not hear speech at activation go on to excel as CI users.

Everyone has the right to post videos as they wish. Others have the right to choose which videos they watch.

I know that my CI journey led me to embrace social media like this forum and Facebook groups. I believe these have been excellent examples of what social media can do. I have learned a lot from these boards and my journey would've been more difficult without the benefits gained from other people sharing their experiences.

[Adam]

I have seen MANY CI activation videos. A majority show the persons reaction to actually hearing something. I think the viewer assumes everything is understood and they hear clearly. I think partly because a number of people actually can understand right out of the gate. My surgeon told me about a patient of his that was activated, walked out into the hall and called him on the phone.

I would say these people are just overwhelmed to hear anything in general.

Most that denounce CIs are culturally Deaf people. The Deaf way back when CIs were first introduced, believed that doctors were trying to wipe out their culture. Sign language is a huge part of that culture. If the people hear and speak, they don't necessarilly need sign language. CI"s in the Deaf community are much more accepted than they were 15 years ago but there are still many Deaf that are totally against CI's. Here in the U.S there is a long history of discrimination against the deaf. In the late 1800's and early 1900's, the deaf were put in insane asylums.

Most people that post these videos, don't go into what happened leading up to the process and the work required after. Many are just going from silence to sound which can be very emotional.

Some videos you can't believe all that you see. One video that went viral for the feel good affect was 29 year old Sarah Churman. The title of the video was 29years old and hearing myself for the first time. As it turns out, that was a little, ok a lot misleading.

She for one didn't receive a cochlear implant. She received the Esteem implant for people hard of hearing. The thing that people had a big problem with that knew about hearing loss was right after it was turned on. She said this was the first time she heard her own voice but her speech was perfect. If you have never heard your own voice, there is no way you can speak clear as a bell right out of the gate. As it turns out, her hearing was at around the severe range. There is also rumors that the company compensated her for the video.

I do believe the author of this colum is confusing the elation of hearing anything with the person can hear perfectly

The writer of this story is a CODA ( child of a Deaf adult) she is against these videos because it gives the illusion of activate and you can hear. There is a great deal of pressure on every culturally deaf person to decide to get a CI. It is easy to say it is a personal decision but in the eyes of an extremely close knit community there is a sense of being a sellout. It is very difficult to talk about a deaf persons decision without factoring in the Deaf cultural taboo of a CI.

This person who wrote the article is talking from the standpoint of the Deaf community, not somebody who has gradually or suddenly lost their hearing. This does make a difference. At least as far as the Deaf in the U.S. Where I believe the story was written

I do think we need to be very passionate about CI"s and BB's as they have changed our quality of life. Some people will agree with you and some won't. That is human nature. If you put yourself out there, you can educate those that are interested. If they don't like it, they don't have to listen.

Take Ivana, she cannot say one company is better than the other due to her position. She has to be neutral and let the patient make that decision. Not being in the medical field, we can offer our experiences and suggest a company if we want to. I personally don't do that. I am a VERY passionate MEDEL recipient and will wave that flag all I can. That is until I talk to a person who is thinking about getting a CI. It is a very personal decision that the person has to feel 100%.comfortable with. I will answer any questions about my hearing journey they ask. I will not tell them which company to go with.

Ivana, I think the person is bothered with other people sharing their joy because again, it "threatens" the deaf culture. They feel like they do not need to be " fixed". They have a rich vibrant history and culture and feel threatened that cochlear implants will wipe out that culture. ( I am speaking of the Deaf culture in the .U.S.) I have studied the Deaf cu.ture here and been involved with it for a number of years as a "hearie" as they called me. I didn't want to write a book so left a lot out

I think this author has looked at all these videos with a chip on the shoulder so to speak. I don't remember any stating " I can hear perfectly" or "this can be you". I think there are some sour grapes there but again, with my knowledge of American Deaf culture, I can see where it threatens, offends...... The author

[Kara of Canada]

That's exactly what I should have said. Thanks Adam. I think the author had a chip on her shoulder as well. I can understand also where she is coming from.

[Ivana Marinac]

Adam,

 

I actually didn't even looked a video but now when you pointed some interesting things - I did. You're right about everything what you've reminded.

But, I didn't refer myself to that - I was shocked that someone is bothered by other man's joy whether it is real or propaganda. Even if it is all propaganda this still doesn't mean that deaf culture take it so offending. Yes, I am very much aware of the Deaf society assurances - last week one girl decided to explant her implant which worked very well because of it. 

Even if it is a total propaganda it still doesn't endanger deaf society. What this girl wrote in her video wasn't totally hoax: I have been communicating with some of my friends within other groups and they were astonished when I made a remark of difference between the terms deaf and hard of hearing - they take it almost as synonym, so technically she's not lying.

 

Regarding spreading a good word for our implants, I do not have choices as you might have - BB doesn't have a real rival: BAHA with the abutment is different category as well as it is BAHA Attract which has slightly different way of transduction of the signal.

Technically, it's not problem to advertise your implant and Med-EL as a company because you're a patient and you can't say: let we try one implant this week and the other other week. Also, I can't do much here either because in my country for one fiscal year state chooses which implant it would be bought. It depends on the price. But still, this is part of my ethic that I can not advertise certain model - I can explain their advantages and disadvantages theoretically because no one can measure brain factor in this story. I can however recommend people to talk about them with relevant people - CI recipients with certain knowledge about CI's.

[Ivana Marinac]

That's exactly what I should have said. Thanks Adam. I think the author had a chip on her shoulder as well. I can understand also where she is coming from.

 

“Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won't come in.” 

― Isaac Asimov

 

 

 

P.S.: What chip?

[Kara of Canada]

The lady was holding a grudge against the CI BORGS!!

[Ivana Marinac]

This isn't anything new - but her reactions to other feeling.... I can't understand... Live and let other live.

[Kara of Canada]

That's right. There are many people who want to learn and there are those who don't!

[Adam]

Doctors are supposed to be impartial. That does not mean they can't give hope. There is a big difference.

As I stated earlier, this author and many other culturally deaf are against anything CI because they feel that they are losing a rich part of their heritage in sign language as the people will be speaking and not signing. They feel that the Deaf person will reject their roots. My NS is very compassionate and caring person and he will try to give the person some hope to hold onto. Is he obligated to give the risks as well as benefits? Yes he is. It is all in the delivery.

This author just isn't going to get it. There are some people after getting activated that are just ot going to be able to understand speech. Sadly that is a fact. But being able to hear environmental sounds is still a big deal. I am not a pie in the sky person and realize for every person that has a successful activation, there are a few that don't go well.

Usually we don't know the back story or how the person progressed after , but the family is excited to share this moment with the world. This again, educates people that CIs are out there and they work. It also gives hope to the hopeless thinking they might never hear.

Some people are going to not like it. Fair enough, don't watch them. We also have to take into account the video I spoke of earlier that wasn't exactly as it seemed.

[Ivana Marinac]

This is true; however, the thruth was not a subject of the article - people's emotions were.

How can you be mad if someone is - happy?

[Adam]

Because a majority of culturally Deaf people in the U.S. Feel like doctors are trying to destroy their heritage by wiping out deafness. This since CIs were introduced has been a VERY hot button topic in the deaf community. The deaf community in the U.S is a VERY tight knit community in each city and state. Early on, if a Deaf person decided to get a CI, they were shunned by the community for turning their back on who they are.

Look up the documentary "Sound and Fury". It was filmed many years ago when CI's were relatively new. I saw sound and fury and "sound and fury 6 years later".

It will give you a good idea of what I am trying to say.

[Ivana Marinac]

Because a majority of culturally Deaf people in the U.S. Feel like doctors are trying to destroy their heritage by wiping out deafness. This since CIs were introduced has been a VERY hot button topic in the deaf community. The deaf community in the U.S is a VERY tight knit community in each city and state. Early on, if a Deaf person decided to get a CI, they were shunned by the community for turning their back on who they are.

Look up the documentary "Sound and Fury". It was filmed many years ago when CI's were relatively new. I saw sound and fury and "sound and fury 6 years later".

It will give you a good idea of what I am trying to say.

I know that Adam, I am just writing something else... Something more intimate - you can be againt a CI (it's your right) but can't separate a device of a live imdividual is ethically problematic question.

Also, we are not talking about deaf person to whom we can understand certain reaction - we are talking about fully functional person who hears well and who get mad because someone got possibility to hear...

This is what I can't understand...

[Kara of Canada]

Well I agree with you there. She obviously takes her hearing for granted. She would likely make a different choice if she was confronted with it. I have many family members that I tell about my wow hearing moments. They think it's truly amazing. Apparently my mom was brought to tears when she told one of her sisters!! Unfortunate that people make decisions based on something they have never experienced. Or because they saw one person have a bad experience. No one ever said it was a simple and easy fix.

[Ivana Marinac]

"...If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away."

Henry David Thoreau

[Adam]

I understand.

Being a CODA you usually have the same viewpoint as your deaf parents as you have grown up fully submersed in that culture. Even though she has had plenty of interaction in the hearing world going to school, communicating with people.......

She does not feel that the dead are broken and need to be "fixed".

She is right in that not all recipients have a happy ending for various reasons. What she is doing is lumping everybody into one group which is ironic as that is what she thinks all "hearies" as they call them, do

The deaf community accepted me with open arms. Not just because I was hard of hearing with hearing aids at the time, but because I wanted to get to know them and was earnestly wanting to learn ASL (American sign language) they were very patient.

Things have changed a lot but there is still those deaf that will always be against them.

Any time there is an Alexander Graham Bell association conference, you can pretty much bet that there will be deaf protesters there.

Alexander had a deaf sibling and made it his life's work to eradicate deafness from the world. Ask a majority of culturally deaf about him or the orginazation and you probably will not get a good response.

There was a great deal of abuse in the state run schools as the kids were forced to be oral. No sign language was allowed or you would be punished. These schools (usually 1 in each state) were started because the parents didn't know what to do with the kids. They would go to the school and stay in dorms during the week and come home on the weekends. As a matter of fact, if a deaf person meets another deaf person for the first time, they will give their name and what school they went to and the years.

All that to say, what a hearing person living fully in hearing society thinks is a good thing and would do in a second for their child, a number of deaf don't feel the same.

[Kara of Canada]

Actually Adam Alexander had a deaf child that he taught. She later became his wife.