Monday, April 19, 2010

The Confused Group of Misled People regarding the CA Bill AB 2072

Seeing and reading about the confused group of misled people whose agenda is to oppose and fight against those who are opposed to the CA Bill AB 2072 is not an issue here. But here's my beef: rather than acting as honest political opponents, they are spinning a web of lies and are attempting to distort the facts to the media. Really, shame on them for not being responsible in getting the story straight.

Historically, parents of Deaf children have been hindered from receiving information on the benefits of bilingualism. Too often the information comes too late for the parents to learn signs and incorporate signing in their lives with their Deaf children. It's time now to work together in harmony to see that we can agree that the information shared about bilingualism has historically been grossly insufficient. We need to set aside whatever differences we have in order to agree for the sake of Deaf babies as time is a-wasting. Many people who purport to be advocates sold out to special interests long ago, and parents and their Deaf babies are the ones who's well being and futures are being compromised. It doesn't help to see how information can be twisted (e.g., Orange Juice ) to the point where deliberate confusion results, with members of the public and lawmakers being misled, rather than allowing them to focus on the big picture, which is to give the child the best of both worlds, bilingually and biculturally. 

I am a parent of two Deaf children, have a master's degree in Deaf Education and  a bilingual specialist. We who are non-residents of California are learning how we can visualize a model bill that will allow all parties to come together in unity for the betterment of the lives of Deaf babies in our states. California law is important because California is a "bellwether state." If a bad law is passed in California, then that could lead to other states following suit and also enacting laws that are harmful to the welfare of Deaf babies. I am going to discuss how important it is to keep our eyes on the ball and be vigilant when a bill relating to Early Hearing Detection and Intervention is drafted and proposed.

We must always question who is behind a bill. When it comes to the business of providing information to new parents of Deaf babies, it should respect and be inclusive of Deaf people of all walks of life, as well as parents of Deaf children. In other words, it should respect all who have experienced Deaf issues in their lives or will experience such issues in the future. The so-called "California Coalition," is actually made up exclusively of oral groups who stole the name from the true California Coalition of Agencies Serving the Deaf and Hard of Hearing, "CCASDHH," which includes GLAD, NorCal, etc., (and now CCASDHH has been expanded for the specific purpose of advocating changes in early hearing detection and intervention laws and policies, with the expanded group being called: "The California Deaf Newborn Identification and Advocacy Stakeholder Coalition").
It is this exclusive oral group which calls itself the "California Coalition" which is behind the bill, AB 2072. They excluded the entire ASL-using Deaf community when formulating the bill. Here is Ella's vlog which lists who's who behind the coalition. What gives them the right to think it's OK for only non-Deaf people to have the full say of what's in the bill? Deaf people should be included, not excluded, when formulating such a bill since it is Deaf people who have lived the experience of being Deaf. Whose well being would be better to be heard than Deaf people themselves? You would want Deaf people to represent this area of concern, wouldn't you?

I have been involved every day as a witness to the process of how leaders of the real California Deaf Newborn Identification and Advocacy Stakeholder Coalition went about discussing the issues related to early hearing detection and intervention. There was never a discussion about excluding speech training or listening-skills training. They never intended to support ASL only to the exclusion of everything else. Nothing was discussed about forcing parents to choose ASL. The discussions talked about ASL needing to be valued and treasured that there are indeed benefits for Deaf babies and children who use ASL, and how this information is sadly often bypassed by parents who don't know what they are passing up.  Yes, I do recognize there are Deaf children who have "succeeded" under an oral-only method, but what is forgotten is that there are long-term mental, emotional, factors which inevitably have an impact, as studies have shown.  
Looking at this part of the bill: "(1) By an audiologist or other related professional at a followup appointment after diagnosis with a hearing loss"--It's easy to see that it is significantly flawed. You can see that the bill mentions "an audiologist and other related professional," but this mention of "other related profession" is too vague, and we strongly feel that things should be spelled out to make it mandatory to include ASL Deaf professionals.
"For deaf children from hearing families, moreover, where the contact with deaf adults and deaf children is not encouraged, this identity exploration can be complicated. For example, deaf adolescents may experience overprotection and or rejection from their hearing parents who do not share the deafness experience and may continue to struggle with accepting their child's hearing loss. For these adolescents, identity exploration may lead to more stress and further diffusion of the individuation process until college" (Bat-Chava, 2000).
ASL often only becomes a part of a Deaf person's identity later, during college or community life, when they enter a period of exploration in these early adult years. Too many stories have included testimony to the effect of: "Oh, how I wish I had learned ASL earlier in my life." "It would have made my life much easier". These are the types of stories we hope don't have to be repeated in the future. Oftentimes, parents wished they had known about ASL earlier as well. When will this unfortunate cycle ever be stopped?
"For deaf individuals who have limited contact with deaf peers, adolescence may be marked with additional challenges—such as isolation, loneliness, and communication difficulties with parents and peers" (Cappelli, Daniels, Durleux-Smith, McGrath, & Neuss, 1995; Foster 1988; Jambor & Elliott, 2005; Kent, 2003; Knutson & Lansing, 1990; Leigh & Stinson, 1991; Murphy & Newlon, 1987). 
It is a risk to prohibit Deaf children from having interactions with Deaf peers. Many parents suffer the misapprehension that if their child has a listening device then the child can be mainstreamed and succeed that way. Although such children might be able to speak and socialize with hearing peers, research has shown that this is not of equivalent benefit as compared to the experience interacting with Deaf peers. It is also crucial for them to have contact with Deaf adults as well.
Keep in mind that not all could succeed using an oral-only approach, however all children would be more likely to succeed with a bilingual approach. "Researchers have emphasized the early use of sign language to engage the child in sequential visual communication patterns. Waxman et al. (1996) found that hearing mothers who were learning and using sign language for communication with their deaf infants seemed to be more sensitive to their infants' visual needs than were mothers who primarily depended on use of vocal language" (Waxman et al., 1996). Remember that most Deaf children are visual learners and this strength should be taken full advantage of in terms of enhanced language learning. When a parent doesn't sign fluently but attempts to sign, it still has made a profound impact on the upbringing of her Deaf child as research studies have shown.
"Spencer (2000) noticed that children (deaf and hearing) with deaf mothers, who used sign language, spent more time watching their mothers than did groups of infants (hearing and deaf) whose mothers were hearing and who were less likely than deaf mothers to produce visual communication." Of course, many mothers would rather have their babies watch and pay better attention to them, so this piece of information would help the parents to realize the importance of using ASL. Here's more: "Swisher (1991) noticed that sign language is simultaneous in its morphology and syntax, which allows information to be transmitted quickly and compactly, in contrast to spoken language that is sequentially strung out in time". Now how many parents knew about this when they were given "communication options"? 

When the bill says this: "(2) By the Early Start Program, provided for pursuant to the California Early Intervention Services Act (Title 14 (commencing with Section 95000) of the Government Code) when a newborn and infant enters the program and when the newborn and infant is referred to the program by a state agency"--We immediately know that there is a lack of Deaf professionals in the Early Start Program. When navigating on the Early Start website it can be seen that there is a lack of any mention about ASL and how ASL Deaf professionals are there to be a part of the team.  It said: "Teams of service coordinators, healthcare providers, early intervention specialists, therapists, and parent resource specialists can evaluate and assess an infant or toddler and provide appropriate early intervention services to children eligible for California's Early Intervention system of services." Why wasn't an ASL Deaf professional mentioned?

Here is a statement from one of the commentators:

"A friend recently met a woman who had a deaf child with a cochlear implant. She was not happy with the outcome of the implant on her child and admitted that she should have contacted a deaf person first before making a final decision to get the implant for her child. Now she is taking an ASL course."

The parents deserve to know the facts based on research and research findings. There are more and more research data about the benefits of bilingualism and yet, parents still don't know about it. It is an unfortunate fact that most currently existing early-intervention professionals are not equipped to share the results of the findings of bilingual research and and are not able to share information about these resources to new parents of Deaf babies. This is something that has to change. The term "communication options" is no longer useful or helpful. The term "optimizing language" is the best way to describe the situation to parents.
Finally, the bill states: "The state shall not incur any cost, nor shall the state be involved in the implementation of this section"--We need to question this. Since the state would not be paying for the brochure, then who would be?  Who gets to decide what goes into the brochure?  Whatever that free brochure is, it has not been shared with and agreed upon by the true California Deaf Newborn Identification and Advocacy Stakeholder Coalition. There is no way anyone should accept the idea of special interest groups being allowed to create, develop, and fund information required to be given out by law without any consequent accountability. If they (the oral coalition) mention ASL in their biased brochures, then the subject is not going to be treated equally and thoroughly like the other options of which are already familiar. We all want parents to be informed and be provided with accurate information, but this is not going to happen if special interest groups are funding and distributing information in this way. We want all stakeholders, Deaf and Hearing, to have input on the information that parents receive as the result of the requirements of any state law.  
What is so wrong with going back to the drawing board and rewriting the bill with the cooperation and assent of The California Deaf Newborn Identification and Advocacy Stakeholder Coalition?

What is so wrong in including a mention of Deaf professionals as also being qualified to be initial contacts, instead of just saying audiologists? 

What is so wrong in challenging and questioning the kind of information that the so-called "California Coalition" wanted to distribute under the sanction of state authority and approval? 

What is so wrong in optimizing Deaf children's language skills rather than just tossing out morsels of ASL like food scraps fed to dogs under the banner of "communication options"? 
One of our opponents claimed: "The sign language lobby is insane." Actually, the truth is that we would be insane to NOT fight for ASL!

Oppose AB2072 Community Discussion, click here.