Sunday, June 29, 2008

DBC and AGB positions on ASL and CIs

Please click here to see Alexander Graham Bell Association (AGB) and Deaf Bilingual Coalition (DBC)'s position on ASL and cochlear implants... or see below for the full URL:

Karla Gunn said it best- children with CIs can still learn ASL. However I was a little concerned when I read Ella Mae Lentz's remarks about CIs and repeating outdated information that only a small percentage of deaf children benefit from CIs. It seemed as if she was speaking on Deaf Bilingual Coalition's behalf, and making it seem as if its ASL versus CI when it could be ASL and CI.

Monday, June 23, 2008

Implant infection answer a winner

The following article was published in The Australian, on June 21st.

The puzzle of why people with cochlear implants are more susceptible to meningitis has been discovered by a Victorian researcher. Bianca Nogrady reports | June 21, 2008
THE brain is an incredibly fragile organ. Evolution certainly thinks so -- it has surrounded this mass of nerves and cells with a solid case of bone to guard against physical trauma, and lined its blood vessels with an almost impermeable membrane to guard against chemical and biological threats. As long as these defences remain unbreached, the brain is relatively safe.

But sometimes they have to be breached. Cochlear implants bypass damaged hearing systems to directly stimulate the auditory nerves, but to enable this, surgeons must drill through the bone and implant electrodes deep within the inner ear, where they come into direct contact with the nerves.
It is testament to the careful design of implants and the skill of the surgeon that this procedure and the device are so safe. But in June 2002, something went wrong. The US Food and Drug Administration began getting reports of bacterial meningitis in children who had received a cochlear implant. Their investigation revealed a 30-fold increase in the risk of bacterial meningitis compared to the general population, especially in children with a particular US-designed cochlear implant that included a "positioner" -- a tiny wedge that held the implanted electrode against the wall of the inner ear. The discovery led to swift withdrawal of that design of implant.
Around the same time, a young Taiwan-born Australian doctor, Benjamin Wei, was taking his first steps on the path to becoming an ear, nose and throat surgeon. But unusually, he also hankered for the laboratory.
"At the time, meningitis and cochlear implants were very topical and I was very interested and I wanted to have some experience in research," says Wei, an ENT surgical registrar and scientist at The Bionic Ear Institute in Melbourne.
Earlier this month, Wei, 31, received the 2008 Victorian Premier's Award for Health and Medical Research for his investigation into the link between implants and pneumococcal meningitis. What he discovered has implications not just for cochlear implants, but for any device implanted in the brain.
Pneumococcal meningitis is the medical term for inflammation or infection of the meninges, the membranes surrounding and protecting the brain and spinal cord, most commonly caused by the bacterium Streptococcus pneumoniae, or pneumococcus. Infection can be treated with antibiotics if caught early, but one in five patients will die and up to half will experience long-term complications including deafness, paralysis and mental retardation.
The FDA's investigation highlighted several risk factors that appeared to predispose cochlear implant recipients to bacterial meningitis, but left many questions unanswered.
"It was hard to say if (infection) was due to cochlear implants because a lot of patients had pre-existing risk factors, such as a malformed inner ear or had a previous history of meningitis because they were immuno-suppressed," says Wei. "No one knows exactly what caused it, whether it was the implants or underlying risk factors."
Wei's first step was to study the effect of a cochlear implant in the absence of these other risk factors. With assistance from the departments of otolaryngology, and microbiology and immunology at the University of Melbourne, he conducted an experiment using healthy rats where some received a cochlear implant and others simply had the operation to insert a cochlear implant without actually getting the device implanted. The rats were then exposed to pneumococcus via the usual routes that infect humans.
This simple study revealed that the presence of the implant lowered the amount of bacteria needed to trigger meningitis, making implant recipients more vulnerable.
"In essence, any time when you have a foreign body in any part of the body we increase the chance of infection," says Wei. The presence of a foreign body seems to impair the activity of immune cells, but there was more to the picture.
A second experiment of a similar design included a group of rats who underwent surgery that caused considerable trauma to the inner ear. It showed that the more trauma inflicted on the inner ear during implantation, the greater the risk of meningitis.
"When you have trauma in the inner ear, it opens more direct communication from the inner ear to the brain, a more direct pathway," Wei says. This offered some explanation as to why the US implant withdrawn in 2002 was associated with increased incidence of infection -- its extra components made it bulkier and the design did not adequately consider the very small dimensions of the inner ear, says Wei.
The end result of these studies was the realization that while any implant can increase the risk of meningitis, poor surgical technique and a more traumatic implant design considerably amplify that risk.
This new understanding has helped shape implant design in Australia, according to doctor Rob Shepherd, director of The Bionic Ear Institute.
"We've done a lot of work both in Melbourne and the cochlear group in Sydney to make sure the electrode array for a cochlear implant is designed for very safe insertion so it doesn't cause any trauma," Shepherd says. "Ben's work doubly emphasised the importance that any new design of any device needs to take into account design that absolutely minimises any trauma."
But Wei's work was not over.
Having identified the route and cause of infection, Wei's next move was to prevent it. The FDA had recommended that children receiving implants should be vaccinated against pneumococcus, but the agency made this recommendation without having clear evidence that immunisation would be as protective in patients with implants as it was in the general population. So Wei went back to his rats, immunised then implanted them, and found strong evidence that vaccination prevented meningitis.
Thanks to what Shepherd described as "elegant and rigorous" research, scientists now have a clearer understanding of what leads to meningitis in cochlear implant recipients, and how to avoid it. Those who stand to gain the most are the patients -- people such as retired high school teacher Joav Niran. He lost hearing in one ear after an explosion in his earlier army days, then seven years ago the hearing in his other ear began to fail after a bout of influenza.
"I couldn't communicate before -- people had to speak to me directly in front of me, sometimes I had to ask people to write things down because I just couldn't understand them," says Niran. His implant changed all that. "Basically, I'm able to communicate ... I'm functioning."
While Australian cochlear implants do not have the same design issues as the American implant withdrawn from the market, Niran, like all implant recipients, was also vaccinated against pneumococcus.
The application of Wei's research also goes beyond the ear to include other devices that by their very nature compromise the brain's defences.
"There are devices such as brain stimulation for treating Parkinson's tremor and potentially also shunt devices that take fluid from the brain in areas where there's build-up of fluid," Shepherd says. A bionic eye, also being developed in Australia, would operate on similar principles to the bionic ear in terms of direct stimulation of the optic nerve, and will therefore also benefit from Wei's findings.
"I think the most important message to come across is that the research is paving the way for better health, making implants even safer, reducing the chance of infection and making infection risk very low," says Wei.
"Our research basically ensures current and future cochlear recipients that the chance of acquiring meningitis is no greater than a person without implants."

Here is the direct link to the article. (The Australian.)


Wednesday, June 18, 2008

"Bilingualism and the Future Generations" Panel live!

Most of you were curious how the panel discussion on "Bilingualism and the Future Generations" went... here is the video for you all to see. It happened on April 10th, 2008 at Gallaudet University.

The panel begins with an introductory presentation by Dr. Dirksen Bauman, a professor of the Deaf Studies department at Gallaudet University, prior to kicking off the recent April 10th Provost's Inclusive Bilingualism Series panel discussion. He discusses statistics and trends in enrollment at Gallaudet and nationwide and questions how Gallaudet should prepare for the future generations of Gallaudet students. Next, a panel discussion was held, with representatives of each department/schools:
  • Lauri Rush, the mother of a Deaf, Bilingual-Bimodal child with a CI shares her experience with the Deaf community and the ASL/English bilingual-bimodal classroom her daughter is enrolled in.

  • Jennifer Drew shares her experience teaching first/only ASL/English bilingual-bimodal class at Kendall School.

  • Nicole LaMont, currently a senior at Gallaudet University, shares her experience enrolling as a freshman at Gallaudet as a new signer with a CI.

  • Daniel DiDonna, currently a freshman at Gallaudet University, shares his experience at Gallaudet as a fluent ASL signer with a CI.

  • John McGinty, a graduate of the Clarke School for the Deaf, student at Northeastern University, and currently an intern at Gallaudet University, shares his experience at Gallaudet as a fluent ASL signer with CIs.

  • Gina Oliva, a faculty member at Gallaudet and the author of "Alone In The Mainstream" shares her experience enrolling at Gallaudet as a new signer. She also shares insights from talking with parents of oral children and children with cochlear implants.
Many thanks to Gallaudet University's Academic Technology for providing us access to view this video clip.

For a text version of happenings on Gallaudet campus about Bilingualism, read Gallaudet's On the Green article here.

Friday, June 13, 2008

Can We Find Common Ground?

If there is a more passionate group of diverse people than the D/deaf community, I have not met them. Not only is hearing loss a very personal issue, it expands into every aspect of one’s interactions with other people. Each person has found their own balance and method of coping with the world. Some people sign, some people cue, some people lip read, some use hearing aids or cochlear implants. Some people are immersed in the ASL signing Deaf community. Some people spend most or all of their time in the hearing community. Hearing loss can be mild, or profound. Some people have many family members who are also deaf. Some people are the only deaf member of their extended family. Most people have hearing parents.

Most D/deaf people have had some less than encouraging interactions with the hearing world. Education can be a challenge. Getting a job can be difficult. Getting an interpreter to help with important events may not even occur. And ignorance within the hearing community is almost a given.

It is no wonder that discussions surrounding methodology, oralism, implants and other issues can get heated (to say the least). It is difficult not to feel that your entire world is being threatened when someone starts talking about not needing what you depend on. It is also difficult to see people making the same mistakes generation after generation, and not get angry about it. How do you not get defensive when someone rejects your very way of life? Should you even try?

And yet… There are children growing up now who have opportunities never before available. They have an easier time in school. They have shown that they can easily interact in the hearing community. And, many of those children have proven that they can also sign ASL fluently. Are these children doomed to be rejected by both the hearing and the Deaf community, or are they the bridge between cultures? Can the ASL Deaf and the oral deaf coexist in peace? Is there common ground that can be found so that the greater needs of all D/deaf people can be supported?

I believe that my child will not be rejected by everyone. I believe that she will thrive where she chooses to plant her roots. I believe that I and my husband are giving her the tools she needs to find her own balance and method of coping with the world. I hope and pray that the world she finds, will give her the chance to prove herself, and not reject her simply because she uses a cochlear implant. She is a beautiful, vibrant, energetic, enthusiastic, brilliant child. It will be your loss if you choose to reject her because of a piece of hardware she wears on her head. Because whoever is fortunate enough to know her, is enriched because of it. Let’s all try real hard to find that common ground.


Wednesday, June 4, 2008

Summer's Story- a film about the life of an ASL-CI User

There is a new DVD created by an ASL-CI User. Check her website:

Summer Crider, who got her cochlear implant at age 6, uses both ASL and spoken English to communicate with her family and friends.
This DVD contains four different films, the first one was made by her mother, Linda Crider. Linda talks about a mother's experience making the decision to proceed with the cochlear implant operation back in 1990. Summer then explains in the second film about what it's like growing up as a bilingual CI user, using both spoken and signed languages. The other two films are segments from PBS's documentary "Through Deaf Eyes" in which Summer appeared on last year and an update on her life since her graduation from high school.

For more information about this DVD, contact

That website has a great resource list for parents and individuals who are considering an cochlear implant and want to learn about sign language, deaf culture, and deaf identity.

Here, below, is a short demo (2 min. clip from her 64 min. long movie) of her recent update.

Tuesday, June 3, 2008

Diversity in D/deafness

How many ways are there to be D/deaf? How many D/deaf people are there now? How many D/deaf people have there ever been? How many D/deaf people will there ever be? That is how many ways there are to be D/deaf. Why is that important? Because we are all here to learn and grow. You cannot learn and grow if you have the exact same opinions and beliefs as everyone else. There is a reason why we are all different. There is a reason why we all have unique experiences and views of the world. There is a reason why it would be wrong for everyone to be D/deaf the same way. We are supposed to be different. We are supposed to bring different strengths and weaknesses to the table of life.

There is a huge chasm in the Deaf World. There are those who see the Deaf Community as the rightful place only for those Deaf who use ASL, and who, for the most part, refuse to use oral speech. Hearing parents of deaf children are allowed to participate in the Deaf Community if they also embrace ASL, and immerse their children in this community. The traitors who choose to live as Oral Deaf, are banished from The Deaf Community, and are ignored as if they simply don’t exist. Ironically, they comprise the majority of D/deaf people. The two camps then routinely send pot shots at each other, with mini skirmishes breaking out on a regular basis. The saddest part of this situation, is that both camps could accomplish way more if they could work together, than if they remain apart.

I absolutely believe that every child should be treated as an individual. There is no single best method of teaching a deaf child. There is no single methodology that works best for everyone. Implants are not the right choice in every case. ASL is also not the right answer for every child. Some children need qued speech. Some children need total communication. Some children need hearing aids. The reason there are so many options, is that somewhere, some child NEEDS that specific option to reach their highest potential. Nobody has the right to say that they know best, what is right for that child or any children simply because they share a feature. Just because you are Deaf, that does not give you the right to deny other options for D/deaf children based on what worked best for you. So you don’t like cochlear implants. You have every right to your opinion. You do not have the right to tell parents that they cannot have their child implanted simply because you say so. That right and responsibility belongs to the parents. And it always will. I believe that D/deaf children have the right to both verbal AND visual communication. They have the right to explore their own lingual strengths and weaknesses based on what works best for them, not based on limitations placed arbitrarily on them at birth or through accident or disease. To that end, I believe that the parents of those children need to educate themselves on ALL the options and choices, and give their children as many options as possible. That way, the kids themselves can choose what works best for them as they grow.

I believe the Deaf Community has an obligation to support those parents as they educate themselves. The Deaf Community needs to support those parents no matter what methodology they choose, and no matter what assistive devices they decide to use. The ongoing war between ASL Deaf and oral deaf needs to end.

The decision to remove Cochlear Implants Online off DeafRead is the wrong one. Choosing to remove differing opinions sends DeafRead backwards into isolationism. Diversity is necessary and should be celebrated, not punished. Can’t we all just get along?


Monday, June 2, 2008

Calling Solitaires for Research Study

Many of us have experienced being the "only one" at some point in our lives. Being the only deaf or hard of hearing person in our elementary, middle, or high school years has made an impact on shaping who we are.

Dr. Gina Oliva, the author of "Alone in the Mainstream: A Deaf Woman Remembers Public School", based her book on a qualitative study on the solitaire* experiences of deaf and hard of hearing people. She wanted to see how these individuals would describe their k-12 years when they were adults, to see how they would view their school years in retrospect. Alone in the Mainstream sheds light on how school experiences influenced the decisions that deaf people make in their lives: whether they choose to remain a oral deaf person or use ASL, become member of deaf community, and how they spend their leisure time.

Dr. Oliva has also been investigating summer camps for the deaf and hard of hearing children. So far, she observed more than ten camps, and has interviewed managers, counselors, parents, and former campers (who are now over age 18).

She is expanding the summer camp study, focusing on a younger group- Generation X- and this will naturally include more individuals with cochlear implants.

She is looking for participants that are between 18-33 years of age who were "alone in the mainstream" for at least 7 years, and who have preferably also attended at least one summer camp.

If you or someone you know fit in this criteria, please contact Gift cards will be given to those who have completed the survey/essay procedures.

Participants' names will not be revealed, however; their experiences/stories may be included in a publication; details may be changed to guard anonymity.

The goal is to help show parents, educators, and professionals who work with deaf/hoh children what solitaire experiences was like for Gen-Xers, so they can better prepare to support future generations.

For further information or questions, contact Support future generations by helping out!

*"solitaire" is a term coined by Dr. Oliva, to give a name to the experience of being the only deaf/hard of hearing child in a hearing school environment.