I am deeply humbled and surprised by the massive response to my January 13th post: Is a Cochlear Implant Right for Our Son. I have been blogging here at Sunshine Praises for almost 4 years and have never had such a passionate response to one of my posts. (Nor have this many men visited, really, I think you have broken the “man” record today) I have tried to think of a way to respond to every comment (over 100 and growing) and hope that this post will answer some of the questions and comments that have been directed towards me.
I want to start by saying Sunshine Praises is like my home. It is a safe place that I have developed to talk about my family. My life. Sometimes I write funny posts, sometimes they are serious. Regardless, they are my own personal beliefs and experiences. I have shared my heartbreak of infertility, loss, faith, cancer, friendship, and grief. I try to be encouraging and hopeful. I chase rainbows and try to live boldly. Sometimes I like to address a topic that is dear to me. Sometimes I just post a cute picture of my kids. No matter what topic I choose to write about, my blog is like a living organism. It lives and breathes. It changes every single day.
For many of you coming here today, it’s like you fell into the last page of a book that is still being written. You read one chapter and decided that you knew the story. I want to invite you to get to know me more. To dive into our past and stick around for our future.
When I wrote this particular post the other day it was in response to yet another comment about a You Tube video. These videos have been the bane of my existence since announcing that the baby is Deaf. Well meaning family and friends have posted these videos on our FB pages and made comments that imply that we are hurting Ezra by not considering a CI for him. But they only see PART of the picture (or video) and it was the other part that I was wanted to expose.
First, I never intended my audience to be other parents of d/Deaf children. I have 10,000 regular readers and I promise that very few of them have Deaf children. It wasn’t even intended for Deaf people (although I knew my Deaf and interpreter friends/family would probably read and respond.) My intended audience were plain old hearing people, who do not understand that there is more to a cochlear implant than what they see on You Tube. My post was meant to inform and create an opportunity for me to express my feelings on the issue and hopefully keep them from making similar comments to someone else in the future.
Second, several people have expressed that the post has inaccuracies. The majority of my information came directly from our personal appointments with our ENT, audiologist and the CI specialist. Yes, we DID have an appointment and yes I DID speak with a CI specialist. Ezra was showing some significant vision concerns and due to his genetic form of deafness and his potential to having significant vision loss, I wanted to know what our options were. I don’t know why my ENT requires both a CT and an MRI and yours doesn’t. I don’t know why our specialist confirmed my concern about the destruction of the cochlea. I can’t answer those questions without reaching out to those professionals. What I do know is that there are serious inherent risks with any surgery and the steps to obtaining a CI are fraught with potential dangers that I am not willing to take.
Third, people are assuming that I am anti- CI or that I am judgmental towards parents who choose to implant their children. Which isn’t true at all. I am anti-hearing people, with no knowledge of Deafness, deaf culture and ASL telling me what my child needs to be successful. I am anti the oppression of Deaf people. I am anti ignorance. I am anti the idea that there is only one right way.
Lastly, many people have wrongly assumed that I have no prior knowledge of the Deaf community or that I have some how been brainwashed by Deaf people into thinking that CI’s are wrong or bad. It might be surprising to know that Ezra is 4th generation Deaf. That I am a Gallaudet alumni (MA, 1999) and that my fabulous husband is Deaf. For the past 20+ years it has been my honor and blessing to be a part of this AMAZING culture and community. I was welcomed into a unique and beautiful world and I am fortunate that many Deaf people (some with CI’s, some without) call me their friend.
I am not the least bit uneducated in difficulties that a Deaf child has in reading and writing. I am not uninformed about the educational challenges that lie before us. I know. Believe me I know.
Chris and I practice a belief called attachment parenting. We co-sleep, bed share and babywear. I breastfeed much longer that most of you would be comfortable with. I delay vaccinations. I use cloth diapers because disposable ones are filled with cancer causing chemicals. I don’t let my baby cry. My baby is intact (you can look that one up). My kids ride rear-facing and five-pointed harnessed in their car seats till they are 16 (just kidding).
Please know that I am thankful for each and every comment, opinion and story. I am blessed that that each of you took the time to tell me how you feel about my post, about being Deaf and about being a parent. It is a privilege to be able to share in the lives of people all over the world through my blog. I do hope that you will come back and follow the rest of our story. We are just at the beginning.
Melanie – I love how you described your bog, especially as a living thing. You are an amazing person and I’m so glad to know you and your family. This is so heartfelt and such an important introduction to your previous post.
Mindy recently posted…Untangling Modesty Messages: What I Hope to Teach My Children About Their Bodies, Clothing, and Modesty
Doug Collicott says
I read and loved your CI post and shared it. I saw the same type of comments as you have. I think one part of the problem was that people saw the title and assumed it to be another pro-ci from a hearing person. I know I did, which is why I read it first. I was shocked that people are saying it was filled with inaccuracies. I had my ci done in 2007 and your description is very accurate. I, obviously, am not anti-ci and I only wish the medical community would look beyond their desire to ‘cure’ deafness. Deafness, in my opinion, is not a disease but an invisible disability, much like depression. It needs to be recognized and understood before it can be helped with assistance. You spoke your opinion on facts that you gathered from the medical field and that is applaudIible. There is no shame in speaking your thoughts and opinions. Keep that up, and God bless.
Melissa Jensen says
Well, if you are also a member of the Deaf community, it very much explains why you continue to spread all of that misinformation about CIs. They are the same ongoing myths used to confuse and scare hearing parents of deaf kids everyday. They are the same lies I was told by the Deaf community 10 years ago, which helped make me make the WRONG decision to not implant my child all those years ago.
If you really want to know the truth, you need to go back to the CI surgeon (not any old ENT) and ask those questions.
I am also an AP parent, and it is my knowledge that I am growing an adult, not just a baby that convinced me to get her a CI. I think she deserves to have EVERY tool, every door open to her, and I knew that when she was grown, she would come to be and ask me why I hadn’t given her this chance, the opportunity to easily hear and speak with everyone in the world and if my answer was “I was afraid”, I knew that wasn’t good enough. That is no reason to avoid giving her a tool that truly changed her life.
That’s great for you and your daughter. Truly. I’m happy that you made the right choice for your family.
But stop acting like your choice for your family is right for everyone else. It is the height of arrogance that you would presume to know what is best for this family when you know next to nothing about them.
Melissa Jensen says
I never ever said that my choice was right for everyone. I simply expressed my experience. I never said anything about presuming to know what is best for anyone except my child. You need to re-examine my comment and read what I wrote rather than what your bias believes.
Melissa Jensen recently posted…Kat’s advice
Melissa, Thank you for spending so much time here at Sunshine Praises. You are obviously a very passionate advocate for CI’s. I am part of the Deaf community and if you had taken even ONE minute to read my “about me” or search my blog before judging and jumping to conclusions you would have known that I am an interpreter and that my husband is Deaf. I see that you are a blogger which means you know you could have done a search for keywords like #deaf #ASL #SignLanguage. I have no secrets. I did not hide that I am part of the Deaf community. Followers of my blog have been following Ezra’s story for months now. These are not secrets. That is however beside the point.
I stand by my original post 100%. Cochlear Implants require surgery. With any surgery there are significant and inherent risks. It is hard work. It is not easy peasy and not all children have success with CI’s. Lots and Lots of families seek out alternative choices after their child does not do well with a CI. I get that your CI experience was different than the one I noted. I can only say that different surgeons, differnt programs, different methods. And trust me I didn’t just go to any old ENT. I am known for seeking out only the BEST for my children.
Here are a few things that I think you might find interesting. At Ez’s very first audiology appt (4 1/2 weeks old), after he had failed the ABR, the audiologist left and came back with the CI specialist/coordinator. She sat down and handed me a few brochures explaining the CI process and “encouraging” me to research the CI for Ezra so he could be “implanted as soon as possible.” I was told he could have loaner aids to fulfill the hearing aid requirement but that I “didn’t really need to use them.” Every question I asked was answered vaguely. Had I been a new mother, having never met a Deaf person, knowing nothing about sign language I would have left that room thinking that a CI was the only solution for my baby. I was not given any information on sign language, sign language programs, our states RHIP program etc. For me that is a very scary reality.
I have read some of your blog and your story. It is obvious by what I read and many of the comments here, that you are well known, a leader per se. I think it is wonderful that you are such a passionate advocate. However, I also hope that you realize that your daughter, CI or not will grow up with at least a foot in the Deaf community and that your relationship and interactions with people like me, will affect her future.
I hope you can see that those people who you feel tricked you into making the wrong decision only shared their own passion and love for their community and language.
Trust me, no one is telling me what to believe. I have 20 years of working with Deaf/HH children to have made up my own mind.
Melissa Jensen says
I actually did read that you were an interpreter and that your husband is Deaf and that your child is forth generation Deaf. In my experience, the hearing people who consider themselves part of the Deaf community are far more militant than many Deaf individuals themselves.
As for your experience, I don’t see how that is a problem. An audiologist’s job is to help a person hear as much as possible. Language is not their purview. They are a doctor. Just like I wouldn’t ask my gyn about painting my house, an audiologist or an ENT doesn’t specialize in language acquisition. If you have questions about ears and amplification, those questions are for audiologists. If you want to know about language, ask a teacher of the deaf or SLP.
If you read my blog, than you know that my daughter’s first language was ASL, that I myself was an interpreter and that she spent 5 years in an ASL bi-bi school and completely immersed in the Deaf community. You also saw that it left her isolated, academically behind and unable to read. She now is 100% oral (thanks to her CIs) is a complete bookworm and has nearly completely closed the gap.
If you don’t want to implant your child, I couldn’t care less. He will be raised in an environment where he will always have access to language, so you are doing your job. The problem I have is that you are misrepresenting the processing of getting cochlear implants and their outcomes. That is what gets parents like myself in a tizzy. You keep saying that “not all children have success with cochlear implants” and yes, that is true. But they almost always know how much benefit a child will get BEFORE they are implanted. Barring additional, unknown disabilities, they know which children are going to do well, and why. http://www.advancedbionics.com/content/dam/ab/Global/en_ce/documents/libraries/AssessmentTools/3-01066-D-2_AuSPLan%20Supplement-FNL.pdf is a link that spell out the expectations for “A”, “B” and “C” candidates. In the 10 years that I have been around kids with cochlear implants, I have known exactly 3 who did not get spoken language benefit from their CIs (out of probably 250-300) and 2 were simply because the parents decided to let the 3 year old decide to not wear it (the third had an auditory nerve issue and the parents decided to go ahead with the implant, and he got some benefit, but not spoken language). So, yes, technically “outcomes vary” but we know exactly what makes up the variation (age of implantation, IQ, cause of deafness, parental follow up) it is not actually a roll of the dice.
I understand that you have made your decision, and believe me, you will get plenty of pats on the back from the Deaf community (especially the uninformed and militant wing) but I think you should actually educate yourself on the matter. Have you met with families with children with CIs? Have you visited the schools they attend? Have you read research on the matter? Have you spoken to therapists and teachers who work with children learning spoken language? I doubt you will change your mind, but it would allow you to have a well informed opinion.
Melissa Jensen recently posted…Cancer? Really??
I’m sorry for what happened to your child. It is actually normal for children’s brains to develop the connection for reading later in childhood. My children started reading around 7 years old. I started reading at 3 years old. My husband at 12 years old. The school itself is not the cause — it’s a neurological process where connections are gradually built to create the foundation for skills. We can try to steer it one way or another, even by taking away enriching things, but it is all up to the kids.
In a mainstreamed environment, books were my escape from isolation and the pressure to speak and hear. Your daughter was removed from a least restrictive environment because it was feared that she would never learn to read and be “normal.” Of course, if someone is put in a room empty of distractions with the only outlet reading and hearing/speaking that would happen. Is it really best for the child’s needs and emotional development? My experience as a deaf person says no.
Seems that what happened to you was confirmation bias. I’m not you so I don’t know the full situation, but I do know what I as a deaf person went through growing up. Your daughter may turn out completely fine, but the way you speak about her, about our gracious host here, and the deaf community speaks volumes. 🙁
Melissa Jensen says
Actually, her old school was the least restrictive environment at that time, and now her new school is. An ASL, bi-bi school met her needs at the time, but today would be a terrible match for her. She now attends a school that is perfect for her. When on earth was she in a room “empty of distractions with the outlet being reading and hearing/speaking” What an odd thing to say.
Melissa Jensen recently posted…Cancer? Really??
Miss kat is in an oral / aural only program right melissa j?
A “room empty of distractions” is exactly what I experienced growing up mainstreamed in an emphasized oral/aural program. Like I said, books and daydreaming was an escape.
Your comment “what an odd thing to say” minimizes an authentic experience by a deaf person, Melissa. I am sorry that your fears and biases prevent you from seeing the full picture of what deaf children experience.
“I am anti-hearing people, with no knowledge of Deafness, deaf culture and ASL telling me what my child needs to be successful. I am anti the oppression of Deaf people. I am anti ignorance. I am anti the idea that there is only one right way.”
This. A thousand times, this.
People have no idea the pressures that are put on the parents of deaf and hard of hearing children BEFORE having to deal with judgmental jerks.
Love this. You are absolutely right that there is not only one right way. I’ve seen numerous blog postings blow up into controversy because people have a hard time reading “this is what we are doing” without hearing “this is what you should/must do”.
I greatly appreciated your perspective here and in the original post. Thank you for that.
and thanks for the chuckle – I thought we were the only ones planning to use 5 point harnesses that long! 😉
(mom to nearly 7 year old twins still in 5 point harness car seats)
🙂 I had to move my 8 year old out of booster and that was traumatic. He is HUGE for his age and fits the belt appropriately though.
You’re to be commended for allowing your blog to be the center of such a heated discussion and post comments from all different spectrums, Melanie. Definitely made for a good read and a good learning experience.
If nothing else, it’s nice to look at all of the remarks and note how happy everyone is with their various situations. There’s no one-size-fits-all “solution” to any strategy, but it’s great to see that it’s tough to go wrong as long as the parental support base is strong.
Good luck again!
psst melissa j. aka miss kat’s mom – this aint about u and ur decision
melanie – thank u for sharing the truth about how much pressure there is for parents to implant and how much propaganda there is in those youtube clips and news stories and how the failures, recalls, complications, shocks, infections, and deaths are not reported or shared in those viral videos and news stories.
they are loaded with misinformation.
your concerns about the various testing and exposure infants get on the way to being implanted are just
a mayo clinic studied that infants and children below the age of 2 who have had 2 or more surgeries of any kind that involve anesthesia show a higher rate of learning disabilities. we know of numerous infants and children who have had 2 surgeries for CI before the age of 2. some because their CIs failed to work or stopped working or caused harm etc.
it pains us to thinking of children possibly be given a permanent learning disability due to CI surgery.
There has also been a noted increase of leukemia and other cancers in children who were exposed to MRIs and such at a very young age.
recently there was a study advising AGAINST early implanting because some of the early newborn and 3 mo screening may be false readings and the child may not really be Deaf after all.
Your main point is very very very valid and true – there is a constant onslaught due to the lack of journalistic integrity and the power of the profits in the CI industry to implant EXTREMELY early – infants are being implanted just a few month after birth even though the FDA recommends after 12 mo and up.
there is NO evidence that says the infant and toddler must be implanted as soon as possible.
there is numerous evidence that the CI does not work well for every infant, child and family – failing the miserably and leaving language deprivation in the wake since CI are often accompanied by pure oralism.
a few years ago when i blogged about CIs i received an onslaught of comments, accusations, and judgments. When i have written about CIs that fail hot – meaning they caused shocks and physical harm when fluid leaked into the internal device, many commentors tried to dismiss and detract.
When i covered CIs that failed cold – just stopped working and infants and children had to be explanted and replanted – i received commentors who tried to discredit and attack.
Wehn i have covered the lawsuits for kickbacks and fraud where audiologists, doctors, and specialists were in bed with CI corporations – likewise.
There is an organized effort to paint the CI as a cure all when in fact it is not.
this is wrong.
Truths should be told and folks who question the onslaught of misinformation via the media should not be persecuted for questioning and telling the truth.
And parents who dont choose CI and parents who do should not be the battle field.
the truth and nothing but it.
Keep standing and doing right by Ezra and your family.
and thank you for sharing your truth and for your great eloquence and heart and appreciating all who have come to your table
Melissa Jensen says
Actually, the previous post was riddled with “misinformation and propaganda” and that is why it blew up. People who have been touched by cochlear implants (either implantees themselves or family members) saw them and felt compelled to correct the continuous spread of false information.
No, this isn’t about me, but it is about truth.
Melissa Jensen recently posted…BLAH BLAH BLAH!!!!
pls SPECIFICALLY identify the misinformation and propaganda in the previous post.
“there is NO evidence that says the infant and toddler must be implanted as soon as possible.”
That’s the one that stuck out to me, though your sentence is somewhat ambiguous so it’s tough to know what you mean. If you’re arguing that there are no studies that concluded that earlier implantation yields better results, just head over to Google Scholar.
Some of the other stuff you posted was true, but were statistical outliers or generally representative of small risk. Example, the Leukemia study – 1 in every 5000 affected, or a .0002% chance.
The anesthesia one was sort of silly to bring up, though. The learning development issues you brought up were…. speech and language.
The reimplanting stat, covering two decades (so including earlier procedures / tech) – 2.9%. And in the study I read, reimplanting generally improved performance.
The stuff you bring up isn’t false or made up, but to someone that wants to perceive sound, it would be like if I told you that you should never get in a car based on the chance of getting in a car accident that could paralyze / kill / require you to get another car.
there is plenty of stuff telling parents and specialists that babies must be implanted as soon as possible the the actual fact is that many folks can choose CI later in life and having speech training and develop speech and listening skills.
they argue it is best to get them as young as possible when in fact it is not needed
what is needed is to get language to the child – the modality is secondary. LANGUAGE is primary. this is why those baby signs studies show they greatly enhance Hearing babies’ cognition, development, contentment etc. there is nothing to prevent a Hearing baby from acquiring sign language.
Deaf babies are hungry for NATURAL language and connections just as much as Hearing babies. they have a right to this also.
professionals and specialists arguing that Deaf babies natural visual acuity and exposure to sign language in order to save up brain space and functionality is not true, necessary, just right or good.
there was also a study showing that despite the early implanting of Deaf toddlers – their brains were NOT responding in the way that the researchers expected i.e. the Hearing parts of their brain were not lighting up as it did with the Hearing subjects in the same age group.
its really interesting when folks try to bring up the FACTS and TRUTHS about the risks with CIs other folks come along and minimize it and bring up car crashes.
re: google scholar – it s handy
Patti, again, there are numerous studies that you can see with your own eyes on Google Scholar that all agree that earlier implantation generally yields better results. Now that I’ve introduced you to scholar, I encourage you to use it.
I absolutely acknowledged the truth of what you brought up. It’s just too bad that you can’t acknowledge the actual content of those studies. .00002% chance of leukemia, and the “learning disabilities” you cited were around speech and language. That’s not watering it down, it’s posting the actual content of the studies instead of masking it to make it scarier than it actually is.
we were discussing: “there is NO evidence that says the infant and toddler must be implanted as soon as possible.”
meaning that kids who are implanted later can achieve desired results of speech and literacy
just as kids who are not implanted can achieve it to sooo……
they presenting it as if it is a medical necessity is NOT cool and if u look at who funds alot of those “studies” with Ns of like 7 u will see it is largely cochlear implant companies and SLS folks etc
re: the learning disability and cancer / leukemia studies – they are important and folks should have the full info.
i provided the link to the full article. You feel i should only quote certain parts of it so its minimized and diminished – nah thanks – we all can use google scholar just as well as u chap.
i care about the weeest precent too
cant tell u how many folks have tried to minimize the deaths from cochlear implant surgery – really breaks my heart. one is too many for a non-life threatening condition
to the parents who have chosen CI and the adults who have chosen them and not experienced any complications – i am very grateful for that. at the same time every person i have spoken to who has a CI has discussed some short comings – quality, consistency, cost of the various accessories, complications, headaches, external part sticking to the drum of the laundry dryer etc etc
whole truth and nothing but it folks
re: the positives of cochlear implants – most folks say at best when its working well – it can elevate a person’s hearing to being that of a partially Deaf person ie hard of hearing.
this means when the activation takes place and the parent says “daddy loves you” and the child turns his/her head – they did not actually hear the words “daddy loves you” but the average viewer does not know that
similar to sarah c. of the 100% implantable device who cried profusely and spoke with a Texan accent but the video was mislabled as “women hears for the first time” and the public thought some type of bloody miracle had happened when in fact she could always hear some as that type of implant is for folks with a severe not profound hearing loss
“You feel i should only quote certain parts of it so its minimized and diminished – nah thanks – we all can use google scholar just as well as u chap.”
Alright, last shot at this.
You’re bringing up these scary facts, yet you, yourself, are the one who isn’t telling “the whole truth” by leaving out those small details, like how the CT scan that increases risk of leukemia does so by .0002% Point zero, zero, zero, two percent.
You bring up the Rochester study but instead of bringing up the fact that the study found impacts were to SPEECH and LANGUAGE, two areas that a deaf child would be at risk for anyhow, you generalize it to “learning disabilities.”
I bring these things up and your response is that I’m the one telling YOU that only certain parts of studies can be quoted? Sigh.
I’m not “minimizing” the facts by bringing up THE ACTUAL INFORMATION FROM THE STUDIES. No amount of thrashing on your part is going to change that. Take it up with the studies if you don’t like their stats.
Obvious as it sounds, statistical significance and context matters. Bring up all of the risks, by all means, because I agree; everyone should be aware of the pros and the cons of operations like these, but as you said – the WHOLE truth, not just the parts that are convenient to your argument.
Temper the alarmism.
i put up some (not even all of it) just some “scary facts” cuz those facts should be known. folks can click the links and read the articles in full or do a search themselves to determine their comfort level with the various risks and adverse effects. The study re: the increased risk of cancer and leukemia for CT scans to the head says that if you NEED the scan the small risk should not prevent / deter you from getting a scan and says if you are concerned should discuss it with your doctor and the study is important because these types of scans involving radiation are on the RAISE in the US.
the mayo clinic appears to have two different studies re: the affect of anesthesia on young children
one in 2011 that says 2 or more surgeries before the age of 2 indicates an increase learning disability – including speech and language
2012 study by Warner says 2 or more before the age of 3 correlates with higher rates of ADHD
you wrote: “I bring these things up and your response is that I’m the one telling YOU that only certain parts of studies can be quoted? Sigh.”
im sorry to make you sigh – you are trying to point out only specific parts of the studies. You have NOT giving links to sources that indicate risks of CI instead you have come forth only to dismiss and minimize some of those studies.
some parents care about even the smallest chance of risk and others dont. point is they should know about it. Many of them dont know about it cuz the video clips and glossy pix dont show those truths.
The risks listed by the FDA are much larger than the ones in the two studies as are some of the harms spelled out in the harms reduction article on language deprivation
re: the whole truth – im all for it.
Andy – you seem to know alot about CI so im wondering if you know what the plastic seal the CI chip and magnet are encased in is made out of and what chemicals the sealant is made out of? Any BPA products in the internal part?
also wondering what your thoughts are on the push to have pure oralism accompany cochlear implantation.
I’m finished with discussing the points you brought up before, Patti. You’ve made it obvious that you’re all about bringing up the negatives without acknowledging the chances of these things happening or the actual impacts they have. Twist it into whatever you want to justify your alarmism, the facts remain. Nothing much more to say, except that it might be interesting if we also mixed the statistical risks of being completely non-hearing (salaries, environmental awareness, etc) into the conversation if we’re fixating on everything that can go wrong with any given route. The whole truth, right?
Anyhow, to answer your questions.
No, I haven’t done any research into the plastic seal specifically. I probably will at some point, but I’m not particularly concerned. FDA approval isn’t exactly a breeze and there’s obviously a long history of CIs being around, but I haven’t read anything yet about the dangers of the makeup of the implant’s seal being of large concern. If you have something that’s actually statistically significant (i.e., greater than .0002%, for example), I’d be interested.
Your second question – prepare for an essay.
I think the fact that pure oralism has worked for so many CI children is wonderful. I don’t think that every kid should be pushed in that direction as each is clearly and obviously unique, so if you’re asking if I think that every deaf child should be pushed to CIs and pure-oral, my answer is absolutely not. CIs and speech are tools, just like ASL is. PERSONALLY, I’m of the belief that more tools are better. That said, there’s a global trend in the decline of sign languages and deaf schools. Not sure if that’s the case in the US yet. But if the population of sign language users is declining, I do think it becomes more important to pick up other means of communication, even if it isn’t necessarily speech. The pure oral approach will probably become increasingly appealing to hearing parents, especially as assistive hearing technology continues to improve. In ten or 15 years we’ll probably see fully-internal CIs that are not only invisible, but use optical stimulation vs. electrical (MUCH better sound). In 20 or 25 years we’ll likely have flat-out biological fixes via gene therapy / stem cell therapy, though by that point, whatever the equivalent to CIs are at this point might be better than biological hearing anyhow and we might see hearing folks ELECTIVELY get implanted to take advantage.
So – I bring up all of the future stuff because I think it’s important to acknowledge that speech / oral communication / the ability to sense sound is becoming increasingly more accessible to the deaf, and as the outcomes improve and the downsides decline, the tools to enable that sense of hearing are going to become more popular options (especially to hearing parents). I think the NECESSITY for sign language will decline as these options become more attractive, and with it, the need to use oral communication will rise. Of course, I think there’s also going to be a lot of great tech that can help those without any hearing ability (live closed captioning on steroids, maybe paired with something like Google Glass).
There’s good stuff coming for everyone.
Anyhow, to actually answer your question, I don’t think that everyone should go the oral route and that that’s an individual decision with many pros and cons to weigh. I’m certain that the amount of people who do choose to go the oral route way will only increase over time, though. The effectiveness of the assistive technologies is only going to get better.
i know plenty of folks with cochlear implants who experience pay inequality and job discrimination. Your illusion that CIs are the great socioeconomic equalizer is false.
It helps some and hurts some. And discrimination against Deaf folks (be they partially Deaf, Fully Deaf, speaking, non-speaking etc) matters not – they r still experiencing audism. If in fact folks with CI are experiencing more job opportunities because they can speak – well that is discrimination again other Deaf folks. This has happened with lighter skinned people – experiencing a bit more opportunities but still being treated as less than White folks.
Folks who have CIs are still needing to sue in order to get VISUAL access to spoken communication – see the cases where Deaf folks who have had to sue universities to get CART. It ain’t a cure all and at times CIs have been used by the system to say – hey you are almost a Hearing person so you dont need all these accommodations. Backlash aint no fun.
RE: the FDA and CI safety and the sealant – ohh goodness CI corporations badness. You might want to check out Advanced Bionics’ cochlear implant defect that allowed moisture (brain fluid and such) to leak into the internal device so that folks got shocked etc. One girl’s family recently sued Advanced Bionics for causing her daughter to be shocked so badly she had convulsions and vomiting and had to have the dangerous CI explanted. They won $7.25 million dollars and 40 more lawsuits are said to be in the queue. previously to this lawsuit the FDA had fined Advanced Bionics for switching the sealant company they were using without going through proper approval channels with the FDA. so deciet aint sweet and somethings get changed without folks know and sometimes they get caught due to shocks or whistle blowers like with Cochlear Americas but sometimes they dont. http://www.usatoday.com/story/news/nation/2013/04/18/cochlear-implant-case-award/2094397/
re: your essay
for pure oralism (forbidding the use of signing and visual acuity) – you know that it generally involves some type of abuse – physical, mental and/or emotional?
do you know that there is no harm in giving a child ASL – it does not impede speech or cognitive development and some studies show it actually enhances it
there is not real justification for the use of pure oralism today.
you mention the decline of Deaf schools – this has been a direct result of the push for mainstreaming and the resurgence of pure oralism via the huge push for implantation.
re: some day Hearing folks having implantable devices – well that is most likely where a great deal of the push for experimentation on Deaf children and animals has come from. The market for implanting Deaf infants and adults is pretty saturated right now as it is almost mandatory. Very very very few Deaf children will be raised without CIs in the future. The next frontier of course will be a device for Hearing folks so they can use their hand held computers without using their hands. Of course on the way to that end goal they will have to get out all the kinks and bugs with internal devices and that is basically what they have been working on as they proclaim their great humanitarian efforts to cure the scourge that is the Deaf. All the little glitches like the deaths from the meningitis infections caused by post CI surgery infections, and the leakages, and the facial paralysis, and the destroying of hair cells – all that is getting worked out while still many Deaf children are implanted with little gain from the use of CI.
Now in your essay you discuss how the FUTURE world will be so oral oriented and thus you think the NECESSITY for sign language will decline – however we see that Sign Language has been gaining in popularity due to technology – TV shows and films feature signing people, youtubue and other internet forums mass distribute signing, videophones and skype allow for conversations in natural sign language all over the globe. Folks are now working on translators for Sign Language to speech and vice versa so there will be less and less need for all the drama over a persons inability to speak and/or hear. As you said there is good stuff coming for everyone.
it is just essential for all of us to ensure that the “good stuff” does involve the oppression of languages and cultures and does not endanger children (physically, culturally, emotionally etc). Many folks are expressing concerns about how CI are now being remote controlled by parents and teachers – further removing the child’s bodily integrity and autonomy.
To be clear – i got no problem with Deaf children using speech and audition – they should not be denied such if they so desire and have aptitude for such but the fact that very few will ever have that choice and the inordinate amount of stress that is put upon the parent who does not choose CIs and oralism is not cool.
You might be interested in the most recent article i posted about how study shows that moms and/or the child are faulted when CIs not work like some of the poster child cases.
we have ALWAYS had some folks who pick up the ability to speak and use their hearing whereas others didn’t. Once i asked an audiologist – how is you can have two identical audiograms and one person acquires speech and the other does not and his answer was – why are some people better at drawing or baseball than others – its a talent its not a given.
People erroneously believe hearing = speech and speech = intelligence.
this if false because we do have folks who hear and speak yet are illiterate.
we do have Deaf folks who can speak very well after years of training but into adulthood decide to unplug and only use their speech when absolutely necessary – why because the strain of constantly trying to be what you are not (ie hearing) vs living your life as a Deaf people is a no brainer – they still have jobs, they are still successful, they still have sweethearts and travel the globe, they still pay taxes, they still raise children and have pets and love life so presenting CI as the great savior and equalizer really shows a terrible bent towards all things hearing.
So Andy – im cool with you appreciating the values of speech and hearing – im not cool with you prioritizing it over the right to be Deaf and loved as is.
Everyone who is seeing the onslaught of CI and Oralism as a threat to sign language and Deaf rights really should be advocating for its preservation – not saying “its a brave world after all”
“The arc of the moral universe is long, but it bends towards justice.” ` MLK Jr
thanks for the dialogue
Andy, you said “I’m certain that the amount of people who do choose to go the oral route way will only increase over time, though. The effectiveness of the assistive technologies is only going to get better.”
This overly optimistic statement completely misses the fact that there are Deaf children TODAY who need visual input and many are being denied it in favor of pure auditory and oral input. The best approach would be to use a comprehensive one, utilizing ASL, speech, hearing, reading and ALL possible avenues of input from the beginning and to continue it until a time when the more productive inputs become obvious and the lesser effective ones can be reduced.
Much of the emotion and passion surrounding the CI is based solely on the assumption that HEARING IS BEST. HEARING IS THE GOAL. HEARING IS THE ONLY WAY TO SUCCEED.
What should be noted is that there are generations of Deaf people walking around now who proved that success is not dependent on hearing. The most successful are the ones who were allowed maximized visual input, especially in learning to read and in learning skills. The least successful, (but still independent) ones, are those who were forced to learn through limited avenues, such as aided but incomplete hearing and lipreading only, which is about 30 percent accurate.
Look further and you will see responsible Deaf people who drive, have built their own homes, created lifelong careers based on cleverness and skilled hands, Deaf professionals who rejected the oralism of earlier days and happily adopted ASL in their teens, and Deaf children who are thriving with the comprehensive application of all methods.
People who weigh for oralism, the CI and the use of Hearing standards aren’t seeing these people who prove conclusively that hearing is actually a help, but not a requirement. Why are they being overlooked? Simple. Hearing people cannot understand that hearing is actually not as critical as they think, and are unwilling to admit that because the very idea threatens their core beliefs.
“Your illusion that CIs are the great socioeconomic equalizer is false.”
I know, I have no such illusion. I never said I did.
“for pure oralism (forbidding the use of signing and visual acuity) – you know that it generally involves some type of abuse – physical, mental and/or emotional?”
No, I don’t know that. I’ve never read or heard anything to that extent from the loving parents whose children had AVT, though.
“do you know that there is no harm in giving a child ASL – it does not impede speech or cognitive development and some studies show it actually enhances it”
Yes. I’m not anti-ASL. I hope you realize that. It’s clearly a key tool. As far as impeding speech, I think the argument there is that for kids who are learning to hear, if they have the “crutch” of ASL to fall on, they’ll likely use that more instead of speech. It depends on your goals. I agree that developmentally, it’s not harmful.
“there is not real justification for the use of pure oralism today.”
Shrug. I think that depends on individual goals. A staunch oralist might tell you there’s no real justification to a pure ASL route.
“you mention the decline of Deaf schools – this has been a direct result of the push for mainstreaming and the resurgence of pure oralism via the huge push for implantation.”
The point was just to state that Deaf schools ARE declining, but I noticed your tone. I think your opposite twin would probably reword your sentence like “… this has been a direct result of the success with which kids are being mainstreamed using modern technology and therapy.”
“some day Hearing folks having implantable devices – well that is most likely where a great deal of the push for experimentation on Deaf children and animals has come from. ”
You think that modern CIs are all about “experimenting” on children? That’s sort of off the deep end for me, sorry.
“The market for implanting Deaf infants and adults is pretty saturated right now as it is almost mandatory.”
Don’t be ridiculous. CIs aren’t mandatory. The very blog we’re commenting on is proof of that.
“Of course on the way to that end goal they will have to get out all the kinks and bugs with internal devices and that is basically what they have been working on as they proclaim their great humanitarian efforts to cure the scourge that is the Deaf”
Right. I have the same complaint about hearing aid companies, wheelchair manufacturers, and lasik.
“All the little glitches like the deaths from the meningitis infections caused by post CI surgery infections, and the leakages, and the facial paralysis, and the destroying of hair cells – all that is getting worked out while still many Deaf children are implanted with little gain from the use of CI.”
Honsetly Patti, if you really believe that CI surgeries are rife with issues that happen with great frequency and they consistently offer very little gains you’re only deluding yourself.
“Now in your essay you discuss how the FUTURE world will be so oral oriented and thus you think the NECESSITY for sign language will decline – however we see that Sign Language has been gaining in popularity due to technology – TV shows and films feature signing people, youtubue and other internet forums mass distribute signing, videophones and skype allow for conversations in natural sign language all over the globe. ”
I stated that the near-future will allow for anyone who wants to be able to hear (or want their children to be able to hear), to hear, and that that will make ASL less of a necessity to those who want to hear. I think it’s great that sign language is popular and going strong. It will be for some time, I’m sure.
“Folks are now working on translators for Sign Language to speech and vice versa so there will be less and less need for all the drama over a persons inability to speak and/or hear. ”
Yup – I think that’s awesome, too. And that’s what I was getting at. The ongoing tech march is going to make it easier for people to attain their individual goals or remove some of their prior barriers.
“So Andy – im cool with you appreciating the values of speech and hearing – im not cool with you prioritizing it over the right to be Deaf and loved as is.”
I’m not cool with you making these awful assumptions about me which are incorrect. I have ZERO issue with parents deciding that they don’t want to pursue x, y, or z for their child, be they CIs, hearing aids, ASL, cued speech, whatever. I have ZERO issue with those who don’t think that the capacity to hear is of paramount importance.
What I DO take issue with, however, is people like you who pretend like they’re bringing the real story to the table and sensationalize facts (by leaving out key information) or imply straight-up misinformation (CIs offer little benefit to anyone).
“Everyone who is seeing the onslaught of CI and Oralism as a threat to sign language and Deaf rights really should be advocating for its preservation – not saying “its a brave world after all””
The Deaf culture’s best move against the “onslaught” of CI and oralism is to embrace the people who choose to use these tools and the tools that will come after them instead of trying to feebly discredit the benefit that they commonly (but not always) deliver with alarmism, paranoia, and rejection.
“This overly optimistic statement completely misses the fact that there are Deaf children TODAY who need visual input and many are being denied it in favor of pure auditory and oral input.”
Well, be specific. What exactly is overly optimistic about it? Do you think assistive hearing technology isn’t going to continue to improve?
I didn’t miss the point of the present, the context of that entire paragraph from which you plunked that sentence was about why I believe that future tools are going to make hearing more accessible to more people and why that might drive more oral-based education.
As far as what’s happening today, I agree that it’s an awful situation for a child who needs a certain kind of input to be denied it.
“The best approach would be to use a comprehensive one, utilizing ASL, speech, hearing, reading and ALL possible avenues of input from the beginning and to continue it until a time when the more productive inputs become obvious and the lesser effective ones can be reduced.”
I generally agree. More tools are better, though I think every toolset should be customized to the individual.
“Much of the emotion and passion surrounding the CI is based solely on the assumption that HEARING IS BEST. HEARING IS THE GOAL. HEARING IS THE ONLY WAY TO SUCCEED.”
That’s right, and it’s terrible that so many make that bad assumption. CIs are just another tool, not a nuclear weapon that was designed to maliciously destroy the Deaf community. That’s how some extremists regarded hearing aids back in the day, too.
“What should be noted is that there are generations of Deaf people walking around now who proved that success is not dependent on hearing.”
Certainly, I don’t think anyone who’s remotely informed would argue against that. The Deaf community is amazing (not being sarcastic).
“People who weigh for oralism, the CI and the use of Hearing standards aren’t seeing these people who prove conclusively that hearing is actually a help, but not a requirement. ”
Argh. Was with you until this. It’s a bad generalization to say that people who want to go the CI / oral route don’t know about what those who choose not to use those tools can do. It’s possible that you can believe that you can accomplish great things as a person who doesn’t hear while still wanting to hear. That isn’t unbelievable, is it?
” It’s possible that you can believe that you can accomplish great things as a person who doesn’t hear while still wanting to hear. That isn’t unbelievable, is it?”
I admit to being mystified by this remark. I am a person that doesn’t hear, have already accomplished most of what I set out to do, and somehow don’t want to devote time and energy to the quest of hearing. This is true of most Deaf people. They have other more important things to do and hearing is not a high priority.
There is another group, the partially hearing and the late deafened, who indeed desire hearing and will exert effort and resources for it. This is not the group I am talking about.
“I admit to being mystified by this remark. I am a person that doesn’t hear, have already accomplished most of what I set out to do, and somehow don’t want to devote time and energy to the quest of hearing. This is true of most Deaf people. They have other more important things to do and hearing is not a high priority.”
I think the confusion might be coming from my usage of “you.” I didn’t mean you in particular. 🙂
Melissa Jensen says
Actually, there are at least a few points which you make are factually incorrect.
First, there is only one MRI required. It is not under general anesthesia either.
Second, the CI does not “destroy” the cochlea. You can’t destroy a cochlea. It is merely the bony channel through your temporal bone. It is not a solid, that could be “destroyed”.
Third, many people retain their residual hearing and wear hearing aids in conjunction with their CI.
I also have no idea why you would think that your child couldn’t “laugh and play” if he had a cochlear implant. My daughter does karate, swims, has done gymnastics, goes down slides and jumps on trampolines all with her CIs on. A child with a CI can do anything except touch a Van de Graff machine.
Melissa Jensen recently posted…Auditory cortex development to a 10 year old
these are not inaccuracies by Melanie in her previous post
1. i know of many folks who have had more than one MRI done on the way to getting CIs
2. The general anesthesia is in reference to the cochlear implant surgery which involves drilling through the skull and inserting electrodes to the auditory nerve. Also many infants and toddlers are sedated for the audiology test when sedation is not necessary and affects the child brain – even if just temporarily
3. cochlea hair cells have been destroyed by cochlear implant surgery – this is why some folks have declined to get CIs in the hopes that Stem Cell treatment will be useful. the concern some folks have is that for the folks whose CI surgery has ruined their remaining stem cells – they will not be eligible for stem cell treatment should it ever get perfected
4. the point about wanting her child to “laugh and play” does not mean children with CI do not but rather recognizes that many children cry after the surgery and do not enjoy enduring years of speech therapy and further surgery and some have restrictions on their pay as a result of the CI. i know of several Deaf people who got CIs as children and later had to stop being on the running team as the would feel the internal device moving as they run and made the dizzy and nauseous. I know of a Deaf child who experienced dizziness when swimming after getting a CI so her family forbid her from swimming and could only float in a raft while her cousins and peers splashed, jumped, dived, and swam around her.
so it happens melissa jensen. it happens. your case does not match all the other thousand cases out there and their cases does not match yours.
it is the truth – not every child is laughing and playing fine with their CI. some have even died as a result of their CI surgery.
These are truths that should be acknowledged
cats have also suffered in the quest for hearing perfection. PETA got the NIH to stop the unethical experimentation on cats but there may be other similar ones out there that we are unaware of.
these experiments have been done to try to fine tune CIs so they can discrimination musical sounds better.
you can see the PETA video on youtube – its CC but very graphic so i wont link folks here.
so your claim of melanie’s inaccuracies is really projection. You have been inaccurate about what she said and means and this is kinda typical of ya.
Damage takes place within the cochlea. It has lead to migraines, facial paralysis, and meningitis.
Children with implants are often discouraged from playing contact sports or on equipment that can cause static shocks.
Oreo's Mom says
Patti – can you please provide information on the studies you reference about leukemia and anesthesia and also learning disabilities? You also mentioned a study that talks about not implanting early because of false positives in early screening. I’d love to see the scientific literature as I’m truly curious. Many thanks!
Thanks for asking Oreo
mayo clinic study: “Children exposed to two or more anesthetics before age 3 had more than double the incidence of ADHD than children who had no exposure”
an earlier study – “Mayo Clinic in Rochester have found a link among children undergoing multiple surgeries requiring general anesthesia before age 2 and learning disabilities later in childhood.”
“A study involving thousands of British children provides the first direct evidence that low-dose radiation used in diagnostic imaging produces a small but real increase in a child’s risk of developing cancer within 10 to 15 years, researchers say. The study, published today in Lancet, found that two to three head CT scans can triple a child’s risk of getting a brain tumor. ”
risks listed on the FDA page
What are the Risks of Cochlear Implants?
General Anesthesia Risks
General anesthesia is drug-induced sleep. The drugs, such as anesthetic gases and injected drugs, may affect people differently. For most people, the risk of general anesthesia is very low. However, for some people with certain medical conditions, it is more risky.
[back to top]
Risks from the Surgical Implant Procedure
Injury to the facial nerve –this nerve goes through the middle ear to give movement to the muscles of the face. It lies close to where the surgeon needs to place the implant, and thus it can be injured during the surgery. An injury can cause a temporary or permanent weakening or full paralysis on the same side of the face as the implant.
Meningitis –this is an infection of the lining of the surface of the brain. People who have abnormally formed inner ear structures appear to be at greater risk of this rare, but serious complication. For more information on the risk of meningitis in cochlear recipients, see the nearby Useful Links.
Cerebrospinal fluid leakage –the brain is surrounded by fluid that may leak from a hole created in the inner ear or elsewhere from a hole in the covering of the brain as a result of the surgical procedure.
Perilymph fluid leak –the inner ear or cochlea contains fluid. This fluid can leak through the hole that was created to place the implant.
Infection of the skin wound.
Blood or fluid collection at the site of surgery.
Attacks of dizziness or vertigo.
Tinnitus, which is a ringing or buzzing sound in the ear.
Taste disturbances –the nerve that gives taste sensation to the tongue also goes through the middle ear and might be injured during the surgery.
Numbness around the ear.
Reparative granuloma –this is the result of localized inflammation that can occur if the body rejects the implant.
There may be other unforeseen complications that could occur with long term implantation that we cannot now predict.
[back to top]
Other Risks Associated with the Use of Cochlear Implants
People with a cochlear implant:
May hear sounds differently. Sound impressions from an implant differ from normal hearing, according to people who could hear before they became deaf. At first, users describe the sound as “mechanical”, “technical”, or “synthetic”. This perception changes over time, and most users do not notice this artificial sound quality after a few weeks of cochlear implant use.
May lose residual hearing. The implant may destroy any remaining hearing in the implanted ear.
May have unknown and uncertain effects. The cochlear implant stimulates the nerves directly with electrical currents. Although this stimulation appears to be safe, the long term effect of these electrical currents on the nerves is unknown.
May not hear as well as others who have had successful outcomes with their implants.
May not be able to understand language well. There is no test a person can take before surgery that will predict how well he or she will understand language after surgery.
May have to have it removed temporarily or permanently if an infection develops after the implant surgery. However, this is a rare complication.
May have their implant fail. In this situation, a person with an implant would need to have additional surgery to resolve this problem and would be exposed to the risks of surgery again.
May not be able to upgrade their implant when new external components become available. Implanted parts are usually compatible with improved external parts. That way, as advances in technology develop, one can upgrade his or her implant by changing only its external parts. In some cases, though, this won’t work and the implant will need changing.
May not be able to have some medical examinations and treatments. These treatments include:
MRI imaging. MRI is becoming a more routine diagnostic method for early detection of medical problems. Even being close to an MRI imaging unit will be dangerous because it may dislodge the implant or demagnetize its internal magnet. FDA has approved some implants, however, for some types of MRI studies done under controlled conditions.
ionic radiation therapy.
Will depend on batteries for hearing. For some devices new or recharged batteries are needed every day.
May damage their implant. Contact sports, automobile accidents, slips and falls, or other impacts near the ear can damage the implant. This may mean needing a new implant and more surgery. It is unknown whether a new implant would work as well as the old one.
May find them expensive. Replacing damaged or lost parts may be expensive.
Will have to use it for the rest of life. During a person’s lifetime, the manufacturer of the cochlear implant could go out of business. Whether a person will be able to get replacement parts or other customer service in the future is uncertain.
May have lifestyle changes because their implant will interact with the electronic environment. An implant may
set off theft detection systems
set off metal detectors or other security systems
be affected by cellular phone users or other radio transmitters
have to be turned off during take offs and landings in aircraft
interact in unpredictable ways with other computer systems
Will have to be careful of static electricity. Static electricity may temporarily or permanently damage a cochlear implant. It may be good practice to remove the processor and headset before contact with static generating materials such as children’s plastic play equipment, TV screens, computer monitors, or synthetic fabric. For more details regarding how to deal with static electricity, contact the manufacturer or implant center.
Have less ability to hear both soft sounds and loud sounds without changing the sensitivity of the implant. The sensitivity of normal hearing is adjusted continuously by the brain, but the design of cochlear implants requires that a person manually change sensitivity setting of the device as the sound environment changes.
May develop irritation where the external part rubs on the skin and have to remove it for a while.
Can’t let the external parts get wet. Damage from water may be expensive to repair and the person may be without hearing until the implant is repaired. Thus, the person will need to remove the external parts of the device when bathing, showering, swimming, or participating in water sports.
May hear strange sounds caused by its interaction with magnetic fields, like those near airport passenger screening machines.
Language acquisition for Deaf Children: Reducing the Harms of Zero Tolerance to the Use of Alternative Approaches by Humphries, Kushalnagar, Mathur, Napoli, Padden, Rathmann, and Smith
none of this says that the parents who have chosen CI for their child are bad or wrong. What it does say is that this information should be given attention for consideration when deciding whether or not to implant. Parents choosing not to and ensuring their child has language should not be made to feel inferior or unjust. They have their reasons and more (see above) It also shows that CI are alot more complicated than the glossy pictures are few minute clip of a kid getting their activation (in which many of the videos that don’t go viral – the child is crying and its not for joy)
the truth for which we seek
I posted more of my views here http://www.bioniclissa.blogspot.co.uk/2014/01/cochlear-implants-views.html?m=1
melissa recently posted…Cochlear Implants views
Melissa – awaiting for you to specify HERE what misinformation and propaganda was in Melanie’s previous post.
Melissa W says
Do you mean Melissa Jensen not me? i am called Melissa as well. I didnt say there was any misinformation or propaganda
Melissa W i was referring t Melissa J
thanks for checking
Melissa Jensen says
I did it several times in the comments of the previous post, as did many people. Do you want me to copy and paste?
Melissa Jensen recently posted…Judging others
yes pls – copy and paste here any SPECIFIC item(s) in which Melanie had misinformation & propaganda in her previous POST.
thanks in advance
melissa jensen – i saw your comment above listing out what you inaccurately perceive to be inaccuracies and have responded to you above.
renee weir says
hello, it up you for ur son who wanna having cochlear implant! i have my left ear cochlear implant when i was 14 yo n best sound hear everything better then hearingaids!
all the best for your son in the future
your son such very cute n sweetheart!
Sarah Jane says
I had NO clue that your son is a 4th generation deaf person. I will NOT try to change your mind; I’ll support your final decision.
Sarah Jane recently posted…The Many Uses of Prefold Diapers
Still haven’t heard one person with a ci or who has a child with a ci say anything derogatory about those who choose otherwise. They have defended themselves. That’s all. If there were no offense from the Deaf culture, there would be no need for defense from people who chose to have their deaf children learn to listen and speak by utilizing technology. And thus, no debate.
Do you really think those video clips posted by parents to YouTube are propaganda? Propaganda is, “Ideas or statements that are often false or exaggerated and that are spread in order to help a cause, a political leader, a government, etc.” These are videos from happy parents who want to share a moment. I think you would have to be a pretty far gone conspiracy theorist to think that parents are purposefully organizing videos as propaganda. Take them for what they are.
Ruth, I haven’t had a chance to respond to you directly and honestly have been hesitant. The YouTube videos are a type of propaganda when in the wrong hands. They only show a small moment in a child’s CI journey which can be extremely misinterpreted by well meaning people. I have honestly spoken with people who had absolutely no idea that the CI involved surgery. They truly believed that it was just a different type of hearing aid. When I told my own mother that it meant Ezra having surgery, she was shocked. Videos that show just the “turning” on moment lead people to believe that it is easy and magical. I know it is hard to imagine because you are part of the CI/deaf community but there are actual real people who have never even met a Deaf person IRL. I have had 100’s of emails in the last 48 hours expressing just this sentiment.
Your comment yesterday about “reading the grammar of the people posting” was flat out cruel and disrespectful. I don’t know another way to say it. If you don’t see that as derogatory then I am not really sure what else to say. I will not debate the issue with you.
I appreciate you taking the time and energy to post here. It is clear that you are a very strong advocate for you child I am sure that will only be a benefit to him/her in the future.
Melissa Jensen says
It was not Ruth who said that quote. If you follow the quote tree, it was someone else.
Melissa Jensen recently posted…Kat’s advice
That quote was not from me. I do not believe I have said a mean or rude thing. It’s true that people should know it’s a surgical procedure. Personally, I’m offended when it’s shown as a miracle cure on tv shows too. There was one show, called “What About Brian” that was on for a couple of seasons that was HORRIBLE about that. Yes, we want the truth known. But the whole truth. Not outlandish positives, and also not a list of bad things. When someone is told about the surgery, they should not only be given a list horrible possibilities. I think that’s the problem I have with Deaf culture’s side. It includes only bad things, and also the people who present them often DO tell those of us in the “CI world” that we are bad, or ignorant people. I had a woman in an elevator look at my son’s processors and tell him eye to eye that she was sorry for him, and then look at me with a very spiteful grin and explain to me why it was better to be Deaf. This was a grown woman who spoke and used hearing aides and felt it was her right and duty to accost us like that in a closed space. I said nothing rude to her either though. I simply smiled and thanked her. Please do not think that what you are feeling in the way of pressure to get a cochlear implant is only felt by people who choose not to!
Oh, and as far as the videos as propaganda go. I still don’t see them that way, or see anything wrong with them. You can’t put a journey on YouTube and have people watch it. Plus these people don’t have a journey yet to post. I still say they are simply moments in time being shared. Same as a bajillion other videos out there. They do help people know what the heck a cochlear implant is, which I like. You have no idea how many times my child has been asked “What’s that thing on your head?” Even by nurses at a pediatrician’s office. I still don’t think people are taken to surgery without ever having been informed of anything but the skittles and rainbows of cochlear implants. They may not be told everything immediately, but if there are medical teams who show an activation video and then shuttle a family to surgery, they DO need sanctioned. Cochlear implants are not an immediate, miracle fix. They do not make a child “hearing.” They do require follow up therapy to learn to listen and speak. And of course as with any surgery there are some risks. But that’s what needs known. Not a list of horrible, but highly unlikely, possibilities. Please do not see an information problem and jump to distributing the extreme information on the other side and think it will balance it out. here will be people who will see what I just said and again post a list of stats and claim that they are not “highly unlikely possibilities.” That’s because they are trying to balance things out in the way I just described. Anyone can find a statistic or professional who will give them the information they want to hear. It is our job as parents to take it all in, discern the real truth, and decide what is right for our individual situation.
JUST AN FYI:
I wanted to let you know that Sunshine Praises will be down late afternoon and evening for a pre-scheduled blog maintenance! We are getting a make-over!
Just didn’t want anyone to think I have taken down these posts or the blog.
I read your first post, but didn’t comment as I had nothing to add. I didn’t know anything about CI and have just about zero experience when it comes to the deaf community. I appreciate you taking the time to write this follow up to address comments from the first post. I think you did a wonderful job addressing questions etc. and all the while keeping your cool.
I am soooooooo happy that this hot topic was so well read that it led me to your blog. I loved what you wrote. Love your story. So impressed and I am hooked. I am behind you 110%.
Another new study. Why do they always blame the moms. http://m.sth.sagepub.com/content/39/1/130.abstract
Jeffrey DuPree says
Didn’t want sign up to press like.. SO HERE IT IS !!
Not only is hearing obtained from the CI an incomplete type of input, it requires intensive intervention and training.
That intervention displaces natural parenting. It turns parents into oral-aural therapists and increases the anxiety level if things don’t go well. That would affect neurological development. Oral-aural only training takes input away from the visual to the incomplete auditory channels, and that skews neurological development also by truncating the totality of the input.
On top of that, blaming the parents for less than perfect success is unconscionable and further harms family dynamics. This is the emotional damage that Deaf people have been talking about for years, a chronic feeling of failure or of not meeting the expectations of one’s own parents.
Parents need to know that much of the positive material, including research, is intended to advance the use of the CI even in borderline situations where it would not be advisable. It also comes from mostly hearing people and people devoted to the enhancement of hearing, not as much from Deaf adults.
On the other hand, much of the negative comments on the CI come from a wide range of people…starting with Deaf professionals, Deaf users of the CI, Deaf community members, many hearing professionals who are familiar with the adaptations of the Deaf people, and teachers experienced both with CI and non-CI children. Theirs is a side that is almost never mentioned by the CI proponents. Parents need to look at both sides of the arguments, and — USE THE NEGATIVE COMMENTS TO FORM QUESTIONS THEY SHOULD ASK.
There are always people who know a better way to do everything. Our children are grown and I assure you that we got advice and critiques all along the way on how we should handle life’s challenges (my children don’t have any physical challenges, but that didn’t stop “the help.”) Our daughter is studying to be an ASL interpreter and I couldn’t be prouder. I have learned so much in the last year about the deaf culture. You have chosen what you think best for your child; so just smile politely and keep going ….you’re doing the right thing.