Monday, February 25, 2013

Response to Dr. Karl White's TedxTalk "Establishing A Sound Foundation"

I wanted to comment on Dr. White's TedxTalk video "Establishing a Sound Foundation for Children Who Are Deaf or Hard Of Hearing".  With my permission, he used video of our boys signing in the car with their dad.  

I will comment in order of the lecture, so you may want to watch the first several minutes to get a context:

First, Karl White says, "If not identified early, the deaf child fails to develop language, has a difficult time in school, is socially isolated, and will have a menial or no job later in life."  The entire opening is a typical scare tactic used on hearing parents.  The opening line of this TedTalk begins with a negative view of being deaf.

Let me enthusiastically state that I support early identification! It WILL increase the child’s chances for success IF the parents begin pouring language into their child right away. But, even if it is not discovered that the child is deaf until later, the child CAN succeed and doesn’t have to be behind forever. Scaring the parent into thinking their deaf child will be socially isolated or have no job later in life is bullying.  

A google search for the word "bullying" pulls up this definition: Verb
Use superior strength or influence to intimidate (someone), typically to force him or her to do what one wants.


I would certainly say medical professionals are in a position of superior influence, as are so-called "experts" in a particular field.  Of course, not all medical professionals or experts use that power to intimidate, but what I see here is an example of using intimidation and fear.  I see it all too often.


Dr. White speaks of “Amazing advances” enabling deaf children to achieve.  While I believe that parents have a right to choose technology to aid and amplify the hearing of their child, it's underplayed and downplayed just how much early acquisition of sign language will help the child in their success, even their success in speech, listening, and reading comprehension.  

Helen Keller is used as an example of a Deaf person.  Oh, Helen.  You did some amazing things with your life, but your legacy is not a friend to the Deaf community, only because how the story has been spun.  Deaf and Deaf-Blind are two completely different things.  The 1800s and 2000s are two completely different eras.  To compare Helen Keller with Deaf people today is ignorant.
 

Even within the Deaf-Blind community, how and when one became both deaf and blind makes the person's life experience vastly different. For this reason, it irks me to constantly see Helen Keller used as an example of a Deaf person or a deaf child in today's world.  Using Helen Keller as an example of a deaf child today is like using as an example someone with Spina Bifida in the 1800s to someone with Autism today. You CAN'T do it because they are not alike.

Helen said, "Deafness is much worse than blindness. Blindness separates people from things. Deafness separates people from people."  In HER experience, this was obviously true or she would not have said it, but consider that she suddenly lost both her hearing and her vision at the same time when she was a toddler. She did not have the chance to experience just being deaf or just being blind, therefore, her statement can't be used to "prove" that being deaf is worse than being blind. This quote (again) scares hearing parents. Instead of calming them to understand that their child being deaf does not mean their child will be cut off from the family or the world, the parents are immediately worried, not wanting this “sad fate” for their deaf child. 

The opening instantly gives parents/doctors/spectators the message that “deafness cuts your child off from the world.” There is also an undertone of the fact that a deaf person will always need a “hearing hero” such as Helen had to rescue them out of their soundless world. (Note my sarcasm.)


If you have not seen this video entitled "Early Intervention: The Missing Link" I highly recommend you watch.  This is a much more reasonable way to present the news of a deaf baby to new hearing parents.  

On with the TedTalk video:

Dr. White correctly says, "People are the most important thing. Engaging with the people in your life."  That's true.  When parents learn that their child is deaf, they will have fears about not being able to engage with their child in the way they are accustomed.  The way this talk is presented, parents will assume that without speech (their first language), they will be cut off from their child.  Simply put, it's not true.

What happens between the birth of the child and their learning "listening and speech?"  Imagine if we had adopted the boys and only worked on listening and spoken skills.  I guarantee that Travis would be frustrated and would not be communicating well with anyone right now. He would likely still be throwing horrid fits, banging his head on the wall, and drooling, as he did when we first met him.  American Sign Language is the way to get immediate language access to a deaf child.  The listening and speech can be learned, but over time.


Dr. White showed a photo collage of successful Deaf people, saying that, “Back then, this was the exception rather than the rule.” Well, that type of fame (Beethoven, Edison, Matlin, etc.) is also the exception to the rule in our general culture, hearing or otherwise, wouldn’t you say?  Most people, Deaf, hearing, or otherwise won’t become a world-famous inventor, actor, or composer. These examples DO show that hearing status doesn’t matter when it comes to reaching this rare level of fame. But people such as this will always be the exception to the rule.  Again, this collage is propaganda and is misleading.

Next, Dr. White shows a video of a hearing mom talking about her deaf child.  I love the mom in the video. Her reaction is real and honest. I like that she said, “We were heartbroken, not so much that she was deaf, but that we did not know how to communicate with her.” Beautifully said. Having a deaf child is a true, overwhelming fear for most hearing parents. Sometimes, those of us who are heavily involved in the Deaf community forget how scary that unknown can be.  This is all the more reason that medical professionals and experts should approach the parents in a more positive way.  (Please see the video I linked above.)

The "Key Points" he mentioned here are good. I agree with them as they are written.

Next, Dr. White showed our boys’ video.  He did ask my permission to use the videos and I gave permission. I do not regret giving permission and am thrilled to see their videos get out there. I did have a few problems with what was said. 

He says this type of language success can happen “If given a fluent example” and “If started early.”  While I agree early is best, our boys did not start early. This video was taken 4-5 months after they were first introduced to any type of sign language.  That's a far cry from an early start.  Why do I feel this fact is important?  When framed in the truth, it completely proves the real value of ASL.  It would give hope to parents who don't know ASL.  They would see that they have time to learn ASL along with their child.  They don't have to be perfect, fluent signers with their child from birth.  They can learn, struggle, and sign with their child and see GREAT success.  If they start signing with their child and utilize Deaf mentors, their children will be worlds ahead of my boys by the time they are that age!  This video shows the success of ASL despite the worst possible life start.

Travis missed three years of ANY language at all. He was raised in an orphanage without any exposure to signed langauge!  In his orphanage, he was surrounded by other children who were severely developmentally and physically delayed.  He was plucked out of his home country and culture and brought to America, so any facial cues or lipreading he may have had (didn't seem like he did) was lost instantly.

Tian was not even babbling in Mandarin when we got him at age two. He did respond to sound and we have since learned that he hears almost as well as any other hearing person. He’s completely bilingual, both signing ASL and speaking English.

Cochlear Implants and digital hearing will not achieve language results so quickly. I would love to see ASL promoted as a first language whatever the other language choices may be.  ASL can be acquired and used while going through the long processes of hearing tests, speech training, and even surgeries, if families choose that.

 
I do appreciate that the video was used to show that ASL is a valid choice. Like Dr. White says, “They can communicate every bit as well as hearing people communicate.”  I just wish he showed more of the proof out there to support his statement.  My boys' language is not the best model out there and is certainly not the only model out there.  The other negative comments regarding being deaf make his quote seem empty.  


The next section is about early identification, which is what the speaker is promoting. This is great! I totally support Early Identification.  Dr. White shows a chart stating that both ASL or speech can be considered "successful."  Great, but too often, parents aren't told that they can do both! Ideally, they would explore every option and use both ASL and listening and speech. We first gave our boys American Sign Language so they could connect with us and begin to learn about the world around them. Now that they are in school, we are taking advantage of speech training for Tian and, at some point, will be trying hearing aids for Travis. Our philosophy is to test out every avenue to language that they have. We do draw the line at CIs. For our family, we don’t believe the risk of the implant is worth the possible benefits. (I won’t go in to the whole CI debate, because it’s an endless one.) 


In the same way we choose not to implant Travis, we won’t open Tian’s ear with Microtia/Atresia. The risk of the surgery (involving removing bone from his rib and grafting it to his head to build an ear) isn’t worth any possible benefit. If he wants a prosthetic ear when he’s older, we will explore that with him.

In closing, Dr. White mentions that, although much of his work is with the Sound Beginnings, which promotes listening and speech, he believes early identification is equally important for those families who will choose ASL. Again, it never has to be an either/or. Most Deaf people I know cherish ASL as their first language, but also greatly value speech training they received.  Deaf people certainly value written English.  


The remainder of the talk is specifically about the speaker’s area of expertise. I do love the videoconferencing technology for early language programs. I don’t know if programs promoting ASL are doing this, but it’s brilliant.


In summary, in my opinion, Dr. White does not hold up ASL as an equal option.  It is mentioned for the sake of being mentioned.  It feels patronizing.   Thanks for reading my response.  

Here is another vlog in response to Dr. White's TedxTalk.  You can read a transcript by following the instructions in the video description.

10 comments:

  1. Hi! Let me introduce myself. I am a mother who knowingly adopted a deaf 5 yr. old with NO language up till then, from China. I wasn't "tricked" We KNEW she was deaf. We, her parents, are both hearing. I will be honest, it is MUCH harder than I thought it would be to raise a deaf child in a totally hearing household and community. BUT I TOTALLY AGREE with you that sign language is ESSENTIAL!!! We had a frustrated, fit throwing little girl for several months. The more sign language she learns, the happier and easier to get along with she is. She has a sign language teacher, who is also a dhh teacher that works with her in a mainstream school. We took SEE (don't hate us) sign classes for a year while we waited for her to come home. She does have bi lateral cochlear implants now and got along great with the surgery and recovery, but I will NEVER stop signing!! When the ci's are off for bath and bed, and before she puts them on in the morning....she is still totally deaf. Just because they get implants it doesn't make them not deaf. It is a long slow process to hearing and understanding speech with them, and if we didn't sign she would miss even more language while learning to listen and hear. We felt for OUR family this was the best option for her. We do the sandwich approach with her....speak, sign, speak. She gets both that way and LORD willing, she will eventually understand the spoken word. She is recognizing her name consistently now when called this is a HUGE blessing as we can call her name, then she will look and we can sign to her with out having to go clear over to her and tap her to get her attention. Or when she is about to go out into the street, if I call her name now she will stop and listen. She is also recognizing many environmental sounds now, and while playing in the sandbox, heard a car pull in the lane and turned to look. We are so thankful that ci's were an option for her, but totally respect your decision not to get them. If we were a fluent signing family as a whole, our decision might have been different. But since I as the mother know the most signs....the others will ask me a lot of times....what's the sign for such and such. Even I still look up a LOT of signs. But I would tell any hearing parent of a deaf child.....LEARN SIGN LANGUAGE!!!!! To me its an absolute MUST! It's not fair to the child not to. I love reading your posts and watching the boys:) May God Bless you!

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  2. thank you for sharing your point of view and wisdom

    Dr. Karl White - your bias is self-evident. Not Cool.

    peace

    patti durr

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  3. I appreciated your thoughtful comments about the TEDxUSU talk I gave last November. It was not my intention to use scare tactics or to bully anyone. I am sorry if it appeared that way to some people. Based on your comments I can see that it would have been better for me to have said, "If not identified early, many deaf children will fail to develop language, have a difficult time in school, will be socially isolated, and may have a menial or no job later in life." You are absolutely correct that some deaf children do just fine even when they are identified later. My goal in the talk was to show that deafness need not be a limitation - whether ASL or Listening and Spoken Language is used - deaf people can do anything hearing people can do (e.g., see segments at 0:49-1:06 and 2:23-2:49 from the talk). I also wanted to demonstrate that ASL is a complete, effective language (see segment of talk at 5:23-6:47). Deaf children tend to do better the earlier they are identified and receive support and assistance, but your boys have done extremely well even though they didn't start learning ASL until almost 3 yrs - likely because they had such great support and teaching in their home! I also agree with your point that ASL and listening and spoken language do not need to be, and should not be an either-or proposition. ASL is certainly an equal option.

    Karl White

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    1. Thank you for your thoughts.

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    2. The first 10 minutes are about you showing deafness is not a limitation.. yet in those first 10 minutes you spend less than 3 minutes on ASL. That is not showing it as an "equal option".. it is showing bias. Next time, to be equal, spend equal time showing each before moving on to your current work, and quit with the scare tactics.

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  4. We are a prime example of this very message. A Family that felt "pressured" (dare I say bullied) into Having our 3 yr old daughter Implanted with a CI a year ago. Here we are days away from the 1 year anniversary of it being activated and she HATES the darn thing. Refuses to wear it. After Months of somewhat using it through out the day, she one day just decided she had enough and will have a fit if I mention her putting it on. We DO NOT PUSH IT ON HER! We ask, and if she says no...fine! We are ASL users, and have been since the moment her deafness was brought to light. She has FLOURISHED because of ASL. Does well in her Preschool class, loves her Teachers, and classmates. DOES EVERYTHING A typical (now 4) little Girl should do. She signs with us, tells us about her friends at school. Makes jokes, plays tricks, Went from barely scribbling to now full blown pictures of her fav character BATMAN! Shes so happy, and loves her life. She has Choosen on her own to use ASL as her communication. As its her first language and her right to choose. We are blessed to be her Parents, and priveledged to be a part of her World. Im thankful we will be in A place next school year where she will be on a deaf school Campus in Oahu. (we are army). Were it not for Starting communication with her...though it was late we found out she was deaf...I truly believe she wouldnt be the Funniest little girl that she is. Like You pointed out Sarah, your boys had a later start in communication and yet look at them, they are fantastic and smart and Still absorb information well. We started ASL with our family when Sophie was 18 months old. She went from being frustrated to communitive. While, yes I wish we would have went with our gut and waiting on the Implant, Im proud that We also have the option in place, and that Sophie can decide if and when she wants to use it. If that never happens, and she sticks with ASL, I will be just as proud! We love being a bi-lingual Family! God Bless.

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    1. You have a great attitude, Rebecca. You're daughter is very blessed you have such a positive view of who she is! It's great that you are letting her see what works best for her. I'm sorry you felt bullied into the CI. But she (and you) should have no shame in the CIs. Some of our best friends have CIs.....AND use ASL as their primary language. (By the way, my husband grew up on Oahu! Ewa Beach. Naval Air Base.) :)

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  5. Thank you for this!

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  6. Okay, I think you're offended by the focus on auditory stimulation. The thing is that for people like me, who had a moderate to severe loss as a child, parents being encouraged to seek auditory amplification is a GOOD thing. As for "bullying," I didn't see it. Of course, my father ignored my hearing loss for 2 whole years, until my step-mom demanded testing. I have also spoken to parents who ignored the newborn screening when it showed a hearing loss in one of their child's ears, only to stop shrugging it off when language struggles started. Some hearing parents DO need harsh words to get their attention-those parents are not you or me, because we know the importance of COMMUNICATION, which is easily achieved by non-auditory means for profoundly deaf children than for children with a mild loss surrounded by fully hearing families and friends.

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    1. Hi, Anon,
      Not at all offended by Dr. White talking about auditory stimulation. That's his area of passion/expertise. My issue is with the downplay of ASL an even the misleading way my boys' language is presented.
      If you don't see the bullying from this article, watch this vlog to see what some parents still hear from professionals: http://www.youtube.com/watch?v=FfIelCOfTbs
      I have no problem with auditory/speech training. I have problems with lying, misleading, and misusing power or even perception of power.

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