Karl White speaks

Karl White who is the Professor of Psychology at Utah State University and the founding Director of the National Center for Hearing Assessment and Management (NCHAM) discussed recently with an ASL interpreter in the YouTube comment section of his TEDx video (currently over 10,000 views) regarding parental informed decision, deaf children, ASL, and cochlear implant:


KW: As noted in my TED talk, when CI users remove the CI, they are still deaf. I agree that sign language can be a useful "back-up" language in such situations and I agree that children need access to as much language as possible. It is very important though that parents be able to choose how they want to communicate with their child. The job of professionals is to fairly & completely inform and then support parents in their choice. We should never impose our beliefs on parents.

For newly identified deaf babies, well-informed parent choice is the primary goal. Parents should be educated about all options and then be given excellent programs no matter what they choose. It is not appropriate to say all deaf children should learn ASL any more that it is appropriate to say all deaf children should have cochlear implants — those decisions should be made by the parents after they have been fairly and completely informed about options, pros/cons, risks/benefits, etc.

ASL Terp: Hi! I agree we should not impose our beliefs. There needs to be a balanced, full disclosure approach that shows research on the bell-curve? of CI users. Some do not benefit, some remove over time, some do benefit and some thrive. In addition there needs to be a positive encouragement by professionals for consistent visual language access which is not detrimental to development...and is actually beneficial for bi-lingual, bi-cultural personhood of the Deaf/Hard of Hearing/DeafBlind individual.

How about this...include in your talk an interview with a family who did approach with sign language from onset of deafness/hearing loss, who did implant, the implant was not successful (for whatever reason) and the family expresses gratitude for having fully met their child's needs by providing consistent access to language both auditory and visual. This would demonstrate the value of always have an underlying visual language accessible regardless of the success or lack of success of the CI.

I bring this up because I've seen families who do not do any signing with their kids...get the CI...spend several years trying to educate (up to age 6-7?) the CI is not successful, language is not developing and the parents express shock, grief and guilt that their child has such a delay that was in a sense imposed. Why have families go through that?  I think professionals have a responsibility to ensure all kids are successful to the extent possible with fully disclosed current information.

KW: I agree completely that professionals have a responsibility to fully and fairly inform parents and to work to help children achieve their full potential. There are certainly cases where hearing technology is not successful, just as there are cases where ASL is not successfully used by the family. We need to continue to improve the way we inform and support families as they decide how they want to raise their children.

ASL Terp: I think this is the crux of the controversy around your presentation. What is the basis for saying it is not appropriate for all deaf children to learn ASL? It is readily available to learn, does not harm the child, provides access to visual language, supports interactions with other human beings, provides increased intellectual stimulation. Learning ASL is a win-win. Win for child: 24/7 full access to communication. Win for intellectual and educational bilingualism + CI option.

KW: Sorry, I didn't phrase that well. I don't have a problem with any deaf child learning ASL - IF that is what the parents of that child choose. The key is informed parent choice. Some parents do not choose ASL and they shouldn't be forced to have the child learn ASL. Just like parents who don't want their child to wear a hearing aid or a cochlear implant should not be forced to have their child wear one. Any deaf child whose parents want him/her to learn ASL should be given support to learn ASL.

Parental rights and their deaf child

Joseph Pietro Riolo (JPR) made some very salient points and asked the important questions when it came to parental rights and their deaf children as seen in Patti's blog. I'll use some of Joseph's points and comments in my blog by highlighting them. What it really boils down to is that parents do have the right to decide on how to raise their deaf child in terms of mode and mean of communication and language acquisition.

First, let's talk about the article “And the ears of the deaf shall be unstopped: An Examination of the Cochlear Implant From a Jewish Bioethical Perspective” by Rabbi Darby Jared Leigh whose last paragraph makes a conceding point.

“A consolidation of these views leads only to the idea that from a Jewish perspective we ought not to impose opinions on the people who must make a decision vis a vis the cochlear implant, namely, the parents or legal guardian(s) of deaf children. The responsibility of Jews with respect to the cochlear implant is only to make sure that individuals considering this medical procedure have access to all of the relevant information from the medical community, the Deaf community, and from within Jewish tradition. Once this is done, others should step back and respect the divine image within those individuals, and allow them the space and freedom to reach their own conclusions and make their own decisions.”

JPR makes this comment regarding the article in the last paragraph and I agree with his assessment, too.

This paragraph actually supports the decision to put cochlear implant in a deaf child if his or her parents decide to do so. Also, it supports the decision not to put cochlear implant in a deaf child. In other words, there is nothing wrong with putting or not putting cochlear implant in a deaf child.

Certainly, nothing wrong with putting or not putting cochlear implant in a deaf child. Parental rights are ensured here in allowing them to make the necessary and informed decision for their deaf children.

Next, The Universal Declaration of Human Rights in Article 26(3) it states:

“Parents have a prior right to choose the kind of education that shall be given to their children.” 

I agree with JPR's assessment that this

"strongly suggests that the parents of a deaf child can choose the pure oralism for the deaf child." 

There is nothing in the The Universal Declaration of Human Rights document that states that this parental right would be overridden by the right of a deaf child to be culturally deaf. In fact, there is no mechanism to enforce the right of a deaf child to be culturally Deaf over parents' rights, and there shouldn't be a mechanism to ensure that due to numerous inherent problems as JPR explained why.

How a person is supposed to do when he or she sees that the right of a deaf child to be culturally Deaf is violated? Is he or she supposed to report the violation to police? Is he supposed to report the violation to Child Protection Service (or similar agency)? Is she supposed to report the violation to National Association of the Deaf, Deaf Bilingual Coalition or similar organization that will send a legal team to defend the right of the deaf child? Is he supposed to report the violation to any organization that focuses on human rights? After the violation is reported, how is the right supposed to be enforced? Does this mean that the parents are to be ordered by court or governmental agency to respect, maintain and support the right of the deaf child to be culturally Deaf? What will happen if the parents still refuse to do that?

Indeed. Lots of problems once that Pandora Box is opened.

But let's look at the "Convention on the Rights of Persons with Disabilities." In that document it states that no obligation is required of the parents to use sign language with their deaf children. In other words if parents choose pure oralism without using a signed language approach for their deaf child, the parents do not violate anything in that document supported by the United Nation. Although the document does require governments to accept and recognize the use of sign languages as seen in Article 21(b) and (e):

(b) Accepting and facilitating the use of sign languages, Braille, augmentative and alternative communication, and all other accessible means,modes and formats of communication of their choice by persons with disabilities in official interactions;

(e) Recognizing and promoting the use of sign languages.

Also in Article 24(3)(c) it states:

“Ensuring that the education of persons, and in particular children,who are blind, deaf or deaf/blind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development."

Note the underlined bold in the above which could mean to include CART services, FM loop, sign language (ASL, PSE, SEE, what have you), speaking and listening, and so on. There are a variety of ways that can meet those assurances.

In Article 30(4) it points out for people with disabilities on the

“recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture”

As far as I can tell there is nothing in the document (Convention of the Rights of Persons with Disabilities) forbidding the parent’s right to choose pure oralism, ASL, SEE,PSE, SE, SimCom, contact language, manual alphabet, cued speech and such. Just as well there is nothing in the  document that showed any support of governments to actively suppress the use of sign language through laws, governmental actions and so forth, either.

In fact, JPR pointed out an all too apparent of an obligation and concluded that

"a government has the obligation to deliver education in the modes and means that agree with pure oralism. What the governments cannot do is that they cannot suppress or exclude any modes, means or languages when the parents of children with disabilities want them or ask for them."

And that's the bottom line when it comes to governmental intervention, which is already limited for a reason, on language and mode of communication and that such a decision is still within the parents' rights.

Some people might see choosing oralism over ASL as "punishment" or acts of "genocide" but according to the "Convention on the Prevention and Punishment of the Crime of Genocide" it says nothing of the sort.  JPR elaborated: 

Again, if the parents of a deaf child decide to exercise their right to put cochlear implant in the child and to use the pure oralism when raising the child, they do not violate anything in the Convention on the Prevention and Punishment of the Crime of Genocide.

The only thing in the document that seems to be related to the topic on hand is the term “mental harm” as in “Causing serious bodily or mental harm to members of the group;” (Article II(b)). Although the enumeration of groups does not include linguistic groups (“In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, …” (Article II)), I will assume that the enumeration is broad enough to include the linguistic groups that include Deaf culture.

It may be possible that some people will attempt to argue that depriving a deaf child of ASL is equivalent to “mental harm” on the child. However, the child is usually not a member of Deaf culture if the parents are hearing or are of the Hearing culture. Just because a child is deaf does not mean that he or she is automatically a member of the Deaf culture. In this interpretation, the parents do not violate anything in the convention if they decide to raise their deaf child in a Hearing culture without using sign language.

Two points here as seen in the above underlined bold words. First, there is no intent, systematic or otherwise, to rid or destroy the use of ASL or sign language. Second point is that a deaf child born into hearing parents is not automatically a member of the deaf culture. And that brings up an important consideration about raising a deaf child in a hearing culture without using sign language because doing so does not violate any of the articles or documents I provided in this blog thus far. 

Below JPR explains and clarifies his position which mirrors much like mine in a lot of ways.

1) It is always my personal position that any deaf child – actually, any child – should have the freedom to sign (not just ASL or any natural signed languages but also SimCom, Cued Speech, Signed English and contact languages). But, I would never want to impose my position on any parents. I would write a true story about a deaf child being punished for signing at home; I would write an opinion article criticizing some parents who do not allow their children to sign; I would make a film that tells about a deaf child who run away from draconian parents who do not let him or her to sign; I would search for grants to research on deaf children who are not allowed by their parents to sign; if I were a professional, I would confront the parents and inform them that they are going too far in not allowing their deaf children to sign; and so on.

But, I would never want to create a new right for a deaf child to be culturally Deaf. When we create a new right for a deaf child, we are eroding the parental right. This will give a precedent for the majority (read: Hearing culture) to create another new right for a deaf child to have the access to spoken language through cochlear implant and doing so erodes parental right further more. If the parents of a deaf child refuses to put cochlear implant in the child, the majority will say, “See, any deaf child has the right of access to spoken language and therefore, your child must have cochlear implant. Never mind your parental right to decide how to raise your deaf child. After all, you want bilingualism. Giving cochlear implant to your deaf child will help bilingualism. Your child will have both ASL and the spoken English language. More power to bilingualism!” The deaf child is taken away from their parents for surgery at an undisclosed hospital.

I may go too far in describing the above scenario but it can happen. It is not hard to predict that cochlear implant technology is getting better and better and the success rate is increasing steadily. Before, the success rate was around 1/3 (33%). Now, it is around 1/2 (50%). Maybe, by the year of 2015, the rate may go up to 2/3 (66%). Maybe, by the year of 2020, the rate may go up to 3/4 (75%). It is very tempting for the majority to override the parental right and go directly to the deaf children and have them receive cochlear implant in spite of the objections from their parents.

Creating a new right for deaf child may be cool now but it could give a new precedent for the majority later on.

In other words, be careful on what you ask for.

In my own clarification, I'd be wary of allowing the idea that government be given the consideration to force parents with deaf/hh children on issues regarding sign language, cochlear implant, oral/aural routes and educational upbringing.  Removing parental rights is not the answer. The parents have the right to make an informed decision regarding their deaf/hh child when it comes to mode of communication, the means, language development, and educational upbringing. All we can do is provide all the necessary information for parents and provide them them the necessary resources and support so they can make an informed decision. Just as Rabbi Darby Jared Leigh said in the very beginning of my blog on parents making an informed decision:

Once this is done, others should step back and respect the divine image within those individuals, and allow them the space and freedom to reach their own conclusions and make their own decisions.

And so there you have it.

A model of success: Hands and Voices

This organization prides itself on showing the positive sides of how communication choices are supported and the wide ranging support to parents of deaf and hard of hearing kids. A safe place to explore options and not get involved with emotional or biased confrontations when you contact the organization.

"Who are we? We are parents of ASL signers, cued speech users.... parents of kids with cochlear implants or total communicators... we are people who have common interests connected through the community of deafness. Hands & Voices is a safe place to explore options, get unemotional support (although we can be emotional about it!), learn from one another and share what we have in common. We value diversity and honor the role of parents and family as the single greatest factor in raising a WASK, (our favorite acronym: W ell- A djusted S uccessful K id) "There is room in the community of deafness for an organization like Hands & Voices, and in fact, I think parents, and even many professionals, have been crying out for a group like this," says Leeanne Seaver, Executive Director. "Somehow parents connecting to other parents provides an element of credibility; there's a level of 'knowing & feeling' that only a parent experiences. And parents, especially parents of babies newly identified with deafness or hearing loss, need a way to connect like this without being wary of a sponsoring agenda from a service provider."


Hands & Voices is a non-profit, parent-driven national organization dedicated to supporting families of children who are deaf or hard of hearing. We are non-biased about communication methodologies and believe that families can make the best choices for their child if they have access to good information and support. Our membership includes families who communicate manually and/or orally. From American Sign Language to cochlear implants, our organization represents people from all different approaches to, and experiences with, deafness or hearing loss. We have local chapters comprised mainly of parents along with professionals.

So how did Hands and Voices began? Well, it's a familiar story about poor representation.

In the early-1990s, the Smithsonian Institute in Washington , D.C. , was preparing an exhibit called "Silent America." It was intended to raise positive awareness of the Deaf Community, highlighting cultural and linguistic (American Sign Language) aspects of the Deaf experience. Meanwhile, a number of people who were deaf or hard of hearing, but who were not living with those aspects of the Deaf experience, had a problem with the exhibit. From their perspective, it did not represent who they were-specifically, listening/oral communicators. They resented what they perceived to be the exclusionary nature of Silent America's point of view. Controversy roiled across the land. Both camps fired off angry letters towards each other, and at the Smithsonian exhibit planners. In the end, the Smithsonian scrapped the whole project.

And thus born the idea of coming up with a parental support organization version now called "Hands
and Voices" that began 17 years ago in 1993 in the state of Colorado. What you don't see are leaders who give out marching orders to go out and protest against certain deaf/hh organizations. But instead you have marching orders to embrace all kinds of communication modalities and offer parental support to those who need it. No need to create new words to describe specific oppression. No need to create a new word that describes the concept of idenity, discovery and journey. No need to create phoney hit counts on a website just to look appear authentic. Instead this is about a simple need that all parents and kids with hearing loss want and that is a support mechanism in place for them to help make an informed decision without politics and pettiness getting in the way.

The goal of Hands and voices? See an improved educational and social outcomes for children who are deaf or hard of hearing. And because of the organization's philosopy and support mechanism built in they continue to grow not only in the United States but elsewhere. Today there are chapters in 19 states and one chapter in British Columbia. There are 6 more states underway in getting chapters as well as one in Italy.

So, what are the qualifications in setting up a chapter in your state as a representative of Hands and

 

•Parent as director
•State Department of Education (DOE) representative of Deaf/Hard of Hearing programs as Advisory Board VIP
•Adults who are deaf and hard of hearing
•Members who can effectively advocate for all communication choices, regardless of whatever choice they've made for their own child.
•Teacher(s) of the Deaf/Hard of Hearing
•Educational audiologist
•Representative(s) from Institutions of Higher Education (universities, colleges)
•Parents of children who are deaf
•Parents of children who are hard of hearing
•Parents of children with unilateral or conductive hearing loss
•Parents of preschoolers, elementary-aged, & high school students
•Individuals who represent Deaf culture & community
•Individuals who have expertise with oral communication methodologies.
•Individuals who have expertise with manual communication methodologies.
•Professionals from Part C/infants & toddlers

It's not just parents but people with hearing loss can contribute to this organization as well and the opportunity to provide support they can give to parents looking for help and answers. This is what every parents want. Information about hearing loss while preserving  their parental rights to make informed decisons for their deaf/hh child.

Remember, 90 percent of all babies born with hearing loss are born to hearing parents. That's a big population of parents with deaf/hh children who seek support and answers every day. Not the negative politiking.

And lastly, the Hands and Voices' rallying cry:

If you or your child/student talk or sign... if you talk and sign, or cue, or care, we need you. If you are directly, indirectly, or potentially involved with children who are deaf or hard of hearing and their families, we need you. We need to be united by our hands and our voices . We are parents, professionals, adult mentors, consumers, and others who are in so many ways connected to a cause and to each other through the community of the Deaf and Hard of Hearing. We are card-carrying members of the National Association of the Deaf, the Alexander Graham Bell Society, the American Society for Deaf Children, and Auditory Verbal International. We are Hands & Voices.

Visit your nearest Hands and Voices chapter if you have questions or are curious.

F*ck you, Deaf Community!

Here's an interesting thread that has the title "**** you, Deaf 'Community' " from a hearing father about her four year old deaf daughter. This is an opportunity to read the viewpoints of mostly hearing people on their perceptions and understanding about the Deaf community and its culture, Gallaudet University, schoolings, ASL, sign language, oral/aural approaches, cochlear implant, and education when it comes to deaf and hard of hearing children and their parents. Granted, the views presented in that thread may not be representative of the hearing group as a whole but it certainly does give us some additional insights on their views of the whole Deafness thing in a more or less honest fashion.

Having said that, this is something to think about when it comes to communication choices in light of the upcoming California AB 2072 bill. Candy has a good bead on this as well. The AB 20727 bill states that:

Parents of all newborns and infants diagnosed with a hearing loss shall also be provided written or electronic information on American Sign Language (ASL), Total Communication, Cued Speech, and Listening and Spoken Language communication options for children with hearing loss, including, but not limited to, information about deaf and hard-of-hearing organizations, agencies and early intervention centers, and educational programs.

No conspiracy theory.

No mystery to this bill.

Just a straight up requirement that parents be given information for a wide selection of communication and educational choices be made available to them after the discovery of their newborn or infant with a hearing loss.

The irony is this. There are certain groups of Deaf people who seem to be undergoing an effort to derail this bill. And instead promote that ASL must be the first option for any parents of a deaf or hard of hearing child. Thusly leaving out any real choices for parents to decide. Nevermind the fact that this bill would make a requirement that these parents be given the necessary information so they could make a proper and informed decision on communication and educational options. An option that could involve one communication method or more.

Back to the "F*ck you" thread. This father explained in her first post on what he and his wife had to do based on information available at the time to help her deaf daughter.

We gave our daughter cochlear implants when she was an infant. We made this long and difficult decision based on the research that was available to us, based on the educational resources available in our area, based on the nature of her deafness, and, yes, based on our own biases and desires. She had her surgeries before she was old enough to make the choice for herself, because to wait so long means to give her hearing long after her developing brain can make the best use of it. It is a well-known and long-researched phenomenon that pre-lingual implantation leads to vastly improved speech and hearing skills. But you call it child abuse. You call it cosmetic surgery on an infant, and more than once you called me a monster for it. It is not child abuse, to make complicated decisions about your kids without their input - it's called parenting. Nor is it cosmetic to give my kid a developmental boost. So: f*ck you for heaping accusations of pre-lingual cosmetic surgery child abuse on me.

Our family is learning ASL, and have been since we learned our daughter was profoundly deaf. We will use sign as a second language, indefinitely. My wife is in school to become an interpreter. Nor do we believe in a purely oralist tradition; we acknowledge the importance of communication between deaf people without assistance. We get it, ok? We're committed. But because we gave our daughter cochlear implants, you automatically believe that we're out to destroy ASL, to destroy Deaf culture. You never listen to our reasoning, because what do we know? We're motivated by a desire to mingle in both worlds, and yet we're constantly scoffed at by the Deafies on principle. So: f*** you for your pernicious false dichotomies.

This AB 2072 bill will help alleviate the uncertainty for parents of a deaf/hh child in making an informed decision for the first time. But for groups to purposely derail this bill for the sake of demanding that ASL be given first priority and requirement for parents to follow are certainly not about parental choice but about control. Doing that could very well certainly earn the Deaf community many more "f**** you's" from hearing parents of deaf and hard of hearing children.

Give the parents the opportunity to make an informed decision for their deaf/hh child. Give them the respect and understanding they deserve. And understand that whatever informed decision they make, they still deserve our respect and support. It doesn't matter if you don't like their informed decision, they deserve our respect. Walking all over them and taking away their choices aren't the answer.

Informed Decision....would you accept and support a parents' decision?

There are concerns among many Deaf people that hearing parents of deaf/hh babies and children that they may not have access to all of the necessary information to make an *informed decision* about mode of communicaton to be used. If you watch Barb Digi recent video on YouTube she points out that very same but legitimate concern. However, the biggest test is after the fact when parents do make an *informed decision*. Supposing hearing parents do get all the necessary and relevant materials regarding ASL, SEE, AVT, cued speech, oral/aural trainings, educational aspects and so on. Let's say hearing parents spend considerable time with materials given to them by various hearing loss organizations (AGBell, pro-ASL organizations, pro-bilingual organizatoins, cued speech organizations, etc), met with numerous deaf/hh people, met with various profesional educators and so on over a short but intense period of time. With all the due diligence already undertaken the hearing parents finally make an *informed decision*. They decide to go for the cochlear implant and cochlear implant route for their deaf/hh baby or child. Will you, as a Deaf person unequivocally accept and support the hearing parents' decision for their deaf/hh baby or child? Remember, hearing parents took every effort and did their due diligence effort, including an in-depth comprehensive look at ASL, to make an *informed decision* about their deaf/hh baby or child.

Barb Digi, would you unequivocally accept and support hearing parents' *informed decision* after they have accessed all relevant information decide to go for the AVT and cochlear implant route? I make this challenge to you Barb (and to any Deaf people out there) to answer this question of mine. It is indeed a relevant question to ask.

Watch Barb Digi's video which comes with a built-in scrolling transcript for those who do not know ASL