The right not to be Deaf or not?

I visited Patti Durr's blog on one of her 6 part series "The Right to be...Deaf" and what I found interesting was the Part V discussion with Joseph Pietro Riolo and the 41 comments written there. Joseph Pietro Riolo's comments were insightful with his wickedly smart comments. I'm combining those recent discussions of Joseph's with that of Patti's recent June 2012 blog on preventing language deprivation in deaf and hard of hearing children.  It is a recent proposal to NAD on the effort to get federal and state governments to intervene on Parental Rights to make informed decisions for their deaf/hh children seen in their proposed model (PDF file):

Proposal: The NAD shall set up a Headquarters Ad-Hoc Committee to look into developing model state and federal legislation to prevent language deprivation.

The Committee shall be comprised of individuals with expertise in various relevant areas including legal, educational and socio- and neuro-linguistic development to look into the possibility of making liable actions that causes harm to Deaf children as a result of the deprivation of American Sign Language and develop model state and federal legislation for such liability.
 
The committee should also look into developing model state and federal legislation that would require medical and audiology personnel to refer deaf infants/children and their families to American Sign Language instruction and education prior to undertaking any medical procedure that may presume to provide hearing.

The committee should also develop a strategy for the adoption of these legislation including identifying which states may be most favorable as early adopters of those legislation.
 
This is to be an ad-hoc Headquarter committee reporting to the CEO. A full report including the first draft of a model legislation must be completed by December 1, 2013.

What was interesting is that in the proposal it stated that:

"The NAD shall set up a Headquarters Ad-Hoc Committee to look into developing model state and federal legislation to prevent language deprivation." 

But looking further into the proposal it went from "prevent language deprivation" to the the more specific prevention on the deprivation of American Sign Language by requiring parents to be referred to ASL prior to any cochlear implantation or use of hearing aids.

 The committee should also look into developing model state and federal legislation that would require medical and audiology personnel to refer deaf infants/children and their families to American Sign Language instruction and education prior to undertaking any medical procedure that may presume to provide hearing.

Yet nothing about requiring parents to look into other types of visual language such as SEE or Total Communication which uses a visual language of the English language done in a signed format. No other points were made about other visual language or other supporting inputs such as SimCom, Cued Speech, Signed English and contact languages.

Now,  I'm against any language deprivation for children whether they are hearing, deaf, or hard of hearing. A child's brain crave communication and language inputs whether it's by spoken or visual language. Even Dr. Ron Stern commented in his presentation that any language deprivation is disabling whether it's sign language or the spoken language it does not matter since the brain does not discriminate and craves input. Which means children with hearing aids and cochlear implants can and do get their language inputs via the spoken language.  Just as well in the latest Italian study on 2 months old to 24 months old deaf children who got their cochlear implants showed that those under 6 months were able to develop excellent language and communication developments on par of their hearing peers. Early intervention works as long as parents are actively involved in the language and communication developments just like the parents have done for the little deaf girl Lotte of Norway who can speak 3 languages. 

As for Joseph Pietro Riolo (JPR) he made some very salient points and asked the important questions when it came to Parental Rights for their deaf or hard of hearing children as seen in Patti's blog Part V series . I'll use some of Joseph's points and comments in this blog by highlighting them. What 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. They just need help in the category of getting the right information in an unbiased manner in order to make an informed decision.

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 in support of  parents making a decision on cochlear implant.  Commenters tried to use Rabbi Leigh's same article to "prove" their case saying it is "a moral violation to do surgery on a healthy body" per the Jewish religion:

“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 a comment regarding 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 as long as parents are adequately informed. Parental rights are ensured here in allowing them to make the necessary and informed decision for their deaf children.

JPR used The Universal Declaration of Human Rights in Article 26(3) to point out that parents have a parental right to choose for their children:

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

And argued that it:

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

So it goes that there is nothing in the The Universal Declaration of Human Rights document that states that Parental Rights 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 Parental 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" again. In a proposal to NAD they stated their rationale on why state and federal governments should intervene on Parental Rights.

Rationale: Past attempts through the educational system to ensure that Deaf children are not isolated and linguistically deprived have experienced extremely limited success. Alternative approaches needs to be fully explored.

This motion is timely because the United Nations developed and adopted the Convention on the Rights of Persons with Disabilities (“CRPD”) to advance equality further throughout the world. The CRPD makes repeated specific references to the deaf community and sign language in its text.

However, in CRPD 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 in the document it 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, Total Communication 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.

Next in the proposal to NAD they made a claim about cochlear implant and deaf children.

Today, 80% of children born deaf in the developed world are implanted with cochlear devices that allow some of them access to sound in their early years, which helps them to develop speech.

That 80% statistics comes with no references although in Norway the implantation rate is much higher at 90% to 95%.

Every year approximately 40 deaf children are born in Norway. Approximately 90 to 95 % of deaf children in Norway are offered a cochlear implant (CI) in one or both ears. CI is an advanced hearing aid that helps children to perceive sound. Children with CI have special follow-up needs and their parents have to decide preferred communication mode for their child. In Norway, there are mainly three approaches: use of both spoken language and sign language (bilingual communication), spoken language with sign support or spoken language alone (oral communication).

Yet I believe that in the United States we are no where near that rate, not even at 80%. Some developed countries are more active in getting deaf children implanted such as Norway. As for the United States according to the FDA via the NIH webpage:

According to the U.S. Food and Drug Administration (FDA), as of December 2010, approximately 219,000 people worldwide have received implants. In the United States, roughly 42,600 adults and 28,400 children have received them.

And that's to date since 1990 when first introduced to children. About 1 in 1000 babies born is profoundly deaf each year in the United States. Over 4 million babies are born each year which leaves about ~4,000 babies born profoundly deaf each year where perhaps 88,000 profoundly deaf babies have been born since 1990.  About 1/4 of them or about 25% have gotten their cochlear implant so far. As for European countries the implantation rate comes in around at 70%. In Canada it is estimated that approximately 174 deaf children receive cochlear implants each year though no estimates on the number of profoundly deaf babies that are born each year yet Canada's population is roughly 1/10th of the United States so it perhaps reasonable they have the same cochlear implantation rate as the United States.

Ok. Onward to "genocide." Ghastly, ghastly term!

Patti essentially stated that by denying ASL to deaf children it would  be considered as an "act of genocide" per the Convention on the Prevention and Punishment of the Crime 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. Utterly a fantastical if not an unnecessary paranoid belief.  Second point is that a deaf child born into hearing parents is not automatically a member of the deaf culture. So no use in trying to call deaf babies as "Deaf babies" since the term "Deaf" with the upper case "D" has always denoted to mean culturally deaf people. According to Carol Padden and Tom Humphries, in Deaf in America: Voices from a Culture (1988) explains the meaning and difference between "D"eaf and "d"eaf:

We use the lowercase deaf when referring to the audiological condition of not hearing, and the uppercase Deaf when referring to a particular group of deaf people who share a language – American Sign Language (ASL) – and a culture. The members of this group have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society. We distinguish them from, for example, those who find themselves losing their hearing because of illness, trauma or age; although these people share the condition of not hearing, they do not have access to the knowledge, beliefs, and practices that make up the culture of Deaf people.

Some organizations even attempted to change that very definition by inserting "Deaf" into their own bylaws without giving any real definition to it and could easily be construed to mean only culturally deaf people. Over the last three decades Deaf (culturally deaf) people have made it a point that they "own" that word and for it to mean explicitly one thing, a group that uses ASL and have a 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 necessarily 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 on trying to get the governments to override Parental Rights because it just may backfire.

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. 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 previously 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.