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Deaf Genetics Project at CSUN/UCLA

CSUN and UCLA has received a 3-year project funded by the National Human Genome Research Institute to learn about what deaf and hard-of-hearing people think about the appropriateness and usefulness of genetic testing for deafness.

As mentioned in their brochure, "In our study, we offer genetic counseling and genetic testing for two genes (Connexin 26 and Connexin 30) because they are known to be a common cause of sensorineural deafness ("nerve deafness"). The results of our study will provide much needed information about the impact of genetic testing for deafness on individuals, the deaf community, and society. Our results will also help to determine how to improve the provision of genetic services to deaf and hard-of-hearing adults."

CRITERIA: No matter if you are the only person or one of many people in your family who is deaf or hard-of-hearing, you may be eligible to participate as long as you have been deaf or hard-of-hearing since birth or early childhood. You must also be at least 18 years old to participate in this project.

All the testing and counseling is done at no charge and can take place at either University of California, Los Angeles (UCLA) or at California State University, Northridge (CSUN).

There are different types of deafness. The primary focus of our study is on the sensorineural type. It is important to first learn if your deafness is of this type. We would ask you to have some audiological tests that will be conducted by our research team to learn if you have this type of deafness. You will be asked to fill out a questionnaire on the same day.
Through your participation in this study, you may be able to learn if your deafness is due to Connexin 26 or Connexin 30 genes.

Contact: Christina Palmer, Ph.D. and Patrick Boudreault, Ph.D. - Principal Investigators (310) 794-6395 Voice, (310) 267-2502 TTY/Voice, (310) 267-2502 VP, This email address is being protected from spambots. You need JavaScript enabled to view it. or visit their website for more details, http://www.deafgeneticsproject.org

Hamodia Magazine Prints Responses to Editor

There was a two-part article on "Hearing Their Silent World" which talks about the Jewish Deaf Community and the Jewish Hearing Impaired Community written by Rochel Isaacson on November 1, 2006 and November 8, 2006 Issue in the Hamodia newspaper. See JDCC News Jan/Feb 2007 Issue for more details.

In the December 20, 2006 Issue - Reader's Forum:
By Cassia Margolis

I read Hamodia's magazine article covering issues within the Jewish community for people who are deaf or hard of hearing.

Unfortunately, some of the information was incorrect. Also, it was put forth in a manner which gives the reader the wrong idea about some of the issues.

First of all, there are roughly 45-60 million Americans with hearing loss. The vast majority of these are people who are over 65 and who did not have hearing loss in their youth. I am attaching an excerpt from a current article from the news:
Signs of Hearing Loss: Do you often ask people to repeat themselves? Do you have trouble understanding women and children's voices? Do voices over the telephone sound muffled or distant? Do you hear popping or ringing in one or both ears? If you answered yes to any of these questions, you may have hearing loss. Over 40 million people in the U.S. have some degree of hearing impairment, and most are over age 65.

That number is a bit conservative, but your numbers was way over what is usually quoted. Next, you related your large number to the number of people using ASL (American Sign Language). This made it appear as if only a very small number of people who are deaf use ASL. The reality is quite different.

For people who were born with or acquired a hearing loss that is substantial (severely hard of hearing to profoundly deaf), the actual percentage using ASL as adults is rather high. This is despite the fact that the vast majority were educated using spoken English.

There used to be a "90% rule" that was used to describe the education and language issues for the deaf. Ninety percent of all deaf children are born to hearing parents (actually, this is increasing), 90% of all deaf children are educated orally (not using sign language). By high school, 90% of the oral children will be using sign for their education (no loner oral) and 10 years after high school graduation, 90% of the oral graduates will be using some sign language.

So, instead of the percentage of people who use sign being a very small part of the total number of people with hearing loss, it is really a large percentage of the people who were born with (or suffered at a young age) severe or profound hearing loss.

Those statistics are "pre" cochlear implant statistics. But at least 35% of orally educated will fail out of oral programs before high school graduation. The success of implants varies greatly, and it is not just an issue of "being a good parent" and providing lots of opportunities.

My husband and I had a lovely little boy live with us for most of one school year. He had been implanted and was a student at CID in St. Louis. That is an oral school, and many of the students are implanted. After a couple of years he was labeled a "failure" and the school told his family he couldn't return. As a result, he ended up signing. He lived with us during a period of time when his family lived far from a program that offered sign language. He is a bright boy and even now goes a couple of hours a week for AVR (auditory verbal therapy - a specialized type of therapy for implant users) and his mother is very careful to make sure his mapping (program for the implant) is up to date.

In his school - which is for children who sign - there are many, many students with implants. Some have parents who don't believe you need to make a choice between spoken language and sign, and some who were considered "failures" in oral programs.

Also, cochlear implants do not make a child "hearing". It would be a closer approximation to say that they allow the child to function as if they still had a hearing loss, but less of one. Current research supports families using sign with children who have implants to enhance their language development.

I would like to present the other possibility - that the system of deaf and hearing-impaired education has "failed" them. The expectations are narrow and rigid, and there are a number of children who will not succeed despite early implant surgery and countless hours of therapy.

There are also children who do very well in oral programs, despite being deaf and having a more loosely designed intervention. My deaf son was a student at a program that only uses ASL. He had hearing aids, and I drove him to the local Easter Seals program for speech therapy. I did this because the Deaf School's audiologist had decided my son was too deaf to benefit from speech therapy.

Since we could afford hearing aids, I decided the play-based speech therapy wouldn't hurt him. By the end of preschool, we decided he would do better in an oral program, which is what he wanted. He has been in a mainstreamed classroom without an interpreter, ever since.

He isn't successfully oral because we made oral education a priority - we didn't. He isn't successful because we made sure he didn't' learn to sign first - ASL was his first language. He isn't successfully oral because we killed ourselves and were "the best parents" - what an awful insult to the many parents who do struggle to have their kids succeed orally and then the kids don't. He also isn't successfully oral because he is brilliant. It is a talent like playing the piano by ear. We were fortunate enough to be able to afford the "piano."

Meanwhile, we also have a wonderful deaf daughter - I should say "Deaf" - the capital "d" tells one that she is a person who uses ASL as her primary language.

When she was born, my son was almost 4, and already speaking English and interacting with a lot of different hearing people. When people realized my daughter was deaf (we had hearing aids for her when she was six months old), many people asked us if we were going to do the same program with Sarah as we did with Aaron. Of course, we replied "yes".

I knew they thought they were asking if we would teach her to speak, but what we were really saying is that we would sign with her, and provide her with hearing aids (although at a much younger age than her brother, who wasn't diagnosed until he was 2 1/2) and with some play-based speech therapy. We weren't deciding who she would be or what talents she would have.

We also decided not to have her implanted. That was a decision based on our experience. My husband is a physician, and we have our own issues with the surgery, ones that were not mentioned in your article - the same ones that prompted a couple of our physician friends to agree that it was not a good choice. But it is a choice, and one that each family needs to make on its own.

The real issue is that we are not "disappointed" in her not using much spoken English. Nor do we consider her to be a "failure", or do we consider her world to be "limited." Her deafness, is like our being Jewish, a very fulfilling part of her life, and one that has meaning and value.

In some ways, she has also had a better Jewish education than our son. Our son, who was able to attend a kindergarten program in the community without an interpreter, was not welcome at the local Jewish Day School for three years. When he was finally accepted, it was with a long list of conditions and ultimatums.

Sadly, our problems with the administration never resolved themselves, despite having good relations with most of the teachers, and we had to move him to the public school at the end of second grade. I will forever be grateful to one teacher who, when it was proposed that he be moved back a grade, told the principal that they couldn't do that because he was in the top half of the class, academically. (Although he may not have been the lowest ranked in the class, the teacher's assessment was a generous one.)

I currently work for the State. I help educate parents of children who have hearing loss. I see, first hand, the confusion that comes because of the misinformation families get about implants and signing. I have had to explain to parents that they need to try the hearing aids the state gave to their baby first, before looking at cochlear implants. One baby I work with will , hopefully, be implanted in the next few months. Another child, whose parents were told would need an implant doesn't. She is doing very well with her hearing aids.

The most orally "successful" child I work with was denied speech therapy services, because her speech is so far ahead of most hearing children. That child also is the best signer that I work with. All that information says is that these babies are different - and, just in case I need to tell you this, each is wonderful in his/her own right.

They will also all be successful - not because they speak or sign, but because their parents aren't afraid of any of the options. Nor do they see their children as potentially being "failures." These families will be able to enjoy their children regardless of whether they use more or less speech or sign. They are willing to wait and see their children's talents develop.

There is nothing terrible about being deaf or hard of hearing. Is it limiting? Possibly, in the same way that keeping kosher or Shabbat is. But it is also rewarding - sometimes in ways that are hard to explain to people from the "Outside World". This is true whether a person is oral or signs.

Author's Response:
In response to your assertion that my statistics detailing the numbers of deaf were misleading, my source for this documented data is the World Federation of the Deaf (WFD).

Moreover, you claim that benefits of the cochlear implants are hyped, specifically in my article, and may not prove optimally effective for all deaf. I believe that your statement would apply to all surgical procedures in which the outcome of success varies case by case.

As you have stated, sign language is valuable for those deaf people who opt to communicate in this manner. Nonetheless, the cochlear implant is a key medical breakthrough, and has an overall favorable record in enabling many severe-to-profoundly deaf who likewise have the right to choose to hear.

Rochel Isaacson

Hamodia Magazine Prints Another Response
December 27, 2006

Hamodia Hearing Their Silent World
To the Editor:

As a parent of a hearing-impaired child, I have been exposed to dozens of children with cochlear implants who are excelling in mainstream schools. These kids are forever grateful to current technology that has allowed them to be part of society.

I would like to direct this analogy in response to the article by Cassia Margolis in a recent issue of Hamodia.
An American couple recently moved to France. They were very loyal to their American culture and so when their son was born they decided to educate him only in the English language.

"Why does he need to speak French? And why do others feel we aren't good parents if our child can't communicate in French?, they wondered. "Being American is not a disability," they reasoned. And so they enrolled him in an English-speaking school and they did not consider their son a failure for failing to communicate in French. They did not consider it limiting at all!

I would like to conclude with a message of hatzlachah to all families educating their hearing-impaired children. May you have lots of luck using whichever method works best for your individual child.

M.R. Brooklyn, N.Y.

Marlee Matlin Named News of the Week

Deaf Digest reports in their February 4, 2007 edition: News of the Week: Marlee Matlin times two; first - she is sign singing the National Anthem at the Super Bowl; chances are high that because she is a celebrity, the TV cameras will focus on her, instead of focusing away, as was the case in the past Super Bowl ASL renditions.

Secondly, she is making a movie - the plot very thinly patterned after the Gallaudet University football team. Her movie "Silent Knights" features a big time collegiate football coach who had a bad automobile accident but comes back to coach a "Division 3 deaf football program."

The only Division 3 deaf football program we know of is Gallaudet University.

CSI: NY Has Deaf Roles in "Silent Night"

"Silent Night" -- When an intruder breaks into the home of a deaf family and fatally shoots their teenage daughter, Mac works with the grieving mother who relies on her other senses to provide clues that will help catch her daughter's killer. Along the way she also provides assistance to Mac as he struggles in his relationship with Peyton. Meanwhile, Stella and Danny investigate when a professional ice skater is killed prior to competing in the U.S. ice skating regionals and whose body was found by her best friend, an Olympic skater who thinks she might be to blame for her death. Also, when Lindsay abruptly walks away from a crime scene and loses control of her emotions, the team questions her past, on CSI: NY, Wednesday, December 13 on the CBS Television Network. Rob Bailey, one of the series' producers, directed the episode from a teleplay by Samantha Humphrey and Peter M. Lenkov, one of the series' executive producers, and a story by Anthony E. Zuiker, one of the series' co-creators and executive producers.

Academy Award winner Marlee Matlin ("Children of a Lesser God") guest stars as Gina Mitchum, the grieving mother. Reigning U.S. national skating champion and Olympic silver medalist Sasha Cohen guest stars as Krista Palmer, a champion skater who discovers the body of her friend. Jerry Ferris ("The Bachelorette 3") guest stars as officer Marty Santucci, a police interpreter for Gina Mitchum. Ferris has been signing his entire life as both of his parents are hearing impaired. Claire Forlani ("Meet Joe Black") guest stars in a recurring role as the team's medical examiner and Mac Taylor's girlfriend, Dr. Peyton Driscoll.

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