Ethics and Deafness- Carried Away By Technology

Your child is born deaf and you are hearing. You try to learn sign and you realize that it feels unnatural. Your friend starts telling you about this amazing deaf child who can speak, sing, play the guitar, etc. thanks to this amazing operation and a device called the cochlear implant. You find out that your child is not a candidate for the cochlear implant because of inner ear malformations. You hear about an incredible new operation called an Auditory Brainstem Implant. This will allow your child to hear and eventually speak, despite the malformations. And what do ya know...they perform the surgery right here in Italy.

Then, you read about this child:After an operation to restore his hearing, Jorden Flowers is ready to learn to listen.

JORDEN FLOWERS was born without auditory nerves and ear canals. An auditory brainstem implant surgery - a procedure not approved by the FDA for children his age - has allowed him to hear and speak. But now he must learn to use what he has gained.

By ASHLEY BELAND, The Times-Union

Determination and motivation are two words 5-year-old Jorden Flowers can't say.And he's shown his family, friends and teachers at Clarke Jacksonville that their meanings don't lie in the sounds you speak. Jorden, son of Olympic gold medalist Vonetta Flowers and Johnny Flowers, was born without auditory nerves and ear canals. His twin brother, Jaden, was born healthy, despite the pair being born at 30 weeks."We didn't even know [Jorden] was alive after the doctors came in," Johnny Flowers said. "They started talking about the complications with premature births. They painted a really dark picture of his future."But the 2-pound, 9-ounce Jorden pulled through.That was the first sign of the determination that has become synonymous with the youngster's character. Many other signs would follow, as Jorden became what doctors say is the first American child to undergo an auditory brainstem implant that allows him to hear.The family began researching Jorden's condition and treatments for his disability. Vonetta Flowers said they immediately started to learn sign language so they could teach Jorden to communicate."His first sign was 'milk,'" Vonetta said. "It was funny because he'd do the sign in the middle of the night like he expected you to be watching."While many babies were watching Teletubbies or Sesame Street, Jorden was watching tapes designed to teach babies to sign.

After a couple of years of research and referrals from other doctors, the Flowerses learned of an auditory brainstem implant that enables people without auditory nerves to hear. There was one catch: The surgery isn't approved by the Food and Drug Administration for children under 12. The couple was undeterred and contacted Vittorio Colletti, an Italian doctor specializing in auditory brainstem implant surgeries. Colletti was the only doctor performing the surgeries on children as young as Jorden.The surgery was costly, but Colletti waived his fees and Allianz insurance company donated more than $60,000, Johnny Flowers said. In December 2005, the family was at a Verona, Italy, hospital for Jorden's surgery."We spent Christmas in the hospital that year," Vonetta Flowers said. "We were very grateful because usually Christmas is about presents, and we saw Jorden's surgery as the greatest present of all."Jorden's brain had to heal before the implant could be turned on. He heard his first sounds on Jan. 23, 2006.

While the implant allowed him to hear, it didn't teach him how to hear. That's when Clarke Jacksonville stepped in. After a trial summer program with the school, the family moved to Jacksonville from Birmingham, Ala. Clarke Jacksonville is one of only 53 schools in the country that focus not on sign language or lip reading but on teaching the deaf to listen, Allen said. Since Jorden began classes in the fall, his family and teachers said, they have seen a dramatic improvement in his auditory capabilities."Before coming here Jorden didn't really talk, but there's been such a change," Vonetta Flowers said. "It's been very emotional, and we're constantly reassured of our decision to come here."Jorden also has increased his vocabulary and become more engaged in the classroom, his teacher, Lynn Stoner, said.

Stoner has 10 years of experience at Clarke Jacksonville, but she still marvels at the motivation she sees in Jorden."I think his determination, his motivation, his willingness to learn is amazing," Stoner said. "He just never gives up."Most of the couple's friends and family say the trait runs in the family. Vonetta Flowers was the first African-American to win a gold medal in the Winter Olympics. She used that same determination she sees in her son while training for bobsledding. Vonetta Flowers has retired from the sport to spend time with her children and family.Despite the difficult journey from Jorden's birth to his start at Clarke Jacksonville, his parents don't regret their choices."[Jorden's] first language was sign language, so he could always sign 'I love you,'" Vonetta Flowers said. "... But hearing him say 'I love you' - those are the sweetest words a parent can hear, especially since I never thought I would hear them."

What would you do?A parent has the right to choose.

As seen in
http://rallycapsdotnet.blogspot.com/2008/09/ethics-and-deafness-carried-away-by.html

Too many exempted and excluded from our juries

WHEN she began her landmark legal challenge against a decision to exclude her from jury service, Joan Clarke said she was suing the State because she wanted to perform "this important civic duty".

The married mother of two and former factory worker from Athenry was turned down for jury duty, a task dreaded by many and dodged by untold numbers, because she is deaf.
Deaf since birth, Mrs Clarke, who lip-reads and is training to become a sign language teacher, has claimed that the refusal to allow her to serve as a juror breaches her rights under the Constitution and the European Convention of Human Rights.

And now the State, which should be at the cutting edge of policies and practices that promote equality and inclusiveness, finds itself defending a blanket ban on deaf jurors that appears to defy due regard for people with disabilities.
Would the sky fall in and the sanctity of jury deliberations be inconceivably violated if a sign language interpreter was present to assist Joan Clarke decide the guilt or innocence of one of her (possibly deaf) peers?

Is a deaf person unable to ascertain the demeanour and credibility of an accused, witness or lawyer, jeopardising a criminal trial in the process, just because she cannot hear the proceedings?
Most common law jurisdictions say no, hence the reason why deaf civilians can serve on juries in every state in America and also in Canada and New Zealand.
Only Ireland and the United Kingdom persist with the deaf jurors ban.

Deaf people are not the only people who are banned from serving on juries in Ireland.
Those who have reading difficulties are also automatically excluded, as is anyone who has suffered from mental illness or anyone who regularly attends for treatment by a medical practitioner.

Last week Dermot Ahern, in one of his first forays as justice minister, announced, to much fanfare, that the Government was removing the upper age limit which prevents people over the age of 65 serving on juries. Seventy is the new 65.
Overlooking the fact that the burden of jury duty is disproportionately borne by the young, unemployed, those who are financially independent and the elderly, the minister said that the abolition of the upper age limit recognised the contribution which older people are making to society.
He is, of course, correct in that view. But the largely symbolic and cosmetic change -- the over-65s will still be able to excuse themselves on ageist grounds -- defers for another day the real debate about the need for radical reform of our jury selection regime.
It is worth remembering that juries are meant to be a representative sample of the community, a cross-section of society as a whole.
Yet as this newspaper has pointed out, ad nauseam, they are anything but.

The Supreme Court has held that a jury must be selected from a pool broadly representative of the community so that its verdict will be "stamped with fairness and acceptability of a genuinely diffused community decision".
But a number of factors rail against the cardinal principle of randomly selected, genuinely diffused community decisions, not least the fact that the vast majority of criminal cases take place in one location: the Greater Dublin area.

Add to this distorted national perspective the fact that only those who are on the Dail electoral register can be called for jury service.
The current regime not only excludes all non-voters, and the vast majority of the one-in-10 foreigners who now live here, but the goal of representativeness is also weakened by the disqualification, ineligibility, exemption and excusal criteria set out in the 1976 Juries Act.
The 32-year-old act, which previously barred women from serving on juries, excuses a wide category of people, including ex-prisoners, from jury duty.
Priests, nurses, midwives, vets, teachers, pilots, Dail clerks and dentists can also dodge the draft. Civil servants, gardai and the defence forces are also excused, owing to a public interest justification.

What about the rest of us who are entitled to serve?
Amble into the Four Courts on any day that a jury is being empanelled and you will witness the reluctance of many -- over a third at the last count -- who are unwilling to serve.
The self-employed and high-fliers can't afford up to a three- or four-week sojourn; neither can those who are carers, have children or are otherwise engaged, ie, going off on holiday.
Extraordinary amounts of people parade before judges like schoolchildren claiming that the dog ate their homework. They sheepishly line up with excuses as to why they can't, or more than likely won't, serve on a jury.
Then there are others, like Joan Clarke, who take unusual steps to ensure that they can perform this most important civic duty.

Trial by jury is the most fundamental right afforded to a person accused of a crime. The least we can do is ensure that that right is not undermined.

Movie inspired by youth in D.C.

Laurence Hewitt grew up playing basketball in the District and thought the stories he saw someday would become the basis for his writing. However, it was not until he met a young deaf child that he found the inspiration for his most successful work, "My Brother ... My Keeper," a film that debuts Saturday at the Lincoln Theater in Northwest.

"I was constantly surrounded by interesting stories to write about," Mr. Hewitt, 43, said yesterday. "The story was already in the making, and I felt these characters were strong, but I wanted to put in a twist. Then I thought of my best friend's deaf nephew."
The story is about All-American high school basketball player Bernard Hill, who loses his hearing in a car accident, and the family and friends who help him rekindle his desire to play basketball again and prove his innocence related to a crime of which he was wrongly accused.

"Anyone can see [the film], from young to old," Mr. Hewitt said. "It crosses so many barriers. When you come see this movie, know that it's people from your community doing positive things."
The film was shot in the District and includes a deaf student and scenes from Gallaudet University — the largest liberal arts college in the United States for deaf and hard-of-hearing undergraduates.
A student, Samantha Gill, plays Bernard's sign-language tutor, Monica.

"It was definitely important for me to have a deaf person play" Monica, Mr. Hewitt said. "No one else could have done the deaf community justice."
Mr. Hewitt, who directed the film, said he finished the script 20 years ago, then "had no intentions of doing anything with it."

However, people who read "My Brother ... My Keeper" continuously praised the work, which kept him wondering about the possibilities.
Mr. Hewitt then took a few courses on filmmaking and editing while he started looking for a cast and financing.
"Every two weeks, I took a portion out of my paychecks," he said. "I scraped."
Mr. Hewitt said the film was made entirely with a cast and crew of undiscovered talents, which is the mission of his Up & Coming Entertainment production company.

He said Juhahn Jones, who plays Bernard, learned sign language for the role by interacting with Miss Gill and her deaf friends regularly after classes.
The power of such interaction between members of a community, Mr. Hewitt said, is exactly the message he hopes the film conveys.

Firefighters sign up to protect Deaf households

IF fire breaks out in your home, the smoke detector is the early warning which could save your life.
But imagine you are deaf and the conventional high- pitched noise of a smoke detector is useless.
Time is the vital factor in escaping from a fire, and Moray firefighters trained in the use of sign language are pioneering a new fire safety programme for deaf people.

That includes the installation of new smoke alarms which have a flashing light and vibrator pad placed under the pillow, which alerts people in the event of a fire.

Forres couple Robin and Karen Leach were among the first deaf people to receive a visit this week from fire safety officers Harry Officer and Jim McPherson, who are both based at Elgin.
They went through a comprehensive fire safety check using sign language.
Both firefighters were among a number of Elgin personnel who completed the level one British Sign Language (BSL) course.
However, they have since moved on to more advanced sign language, and are currently the only two firefighters in Grampian trained to level two standard.

In conjunction with Moray Council social services, they are offering to fit the new smoke detectors free of charge in the homes of deaf people.
"We will be going out into the deaf community, who are at higher risk (from fire) because they are unable to hear conventional alarms," said Mr McPherson.
"We are getting more comfortable with the sign language. On our first home visit we were very nervous, but we got good feedback from the people," he added.

They have been taught by Mary Whittaker, a local BSL tutor who runs a local deaf club which has more than 35 members.

Firefighter Jim McPherson checks a smoke detector while colleague Harry Officer (left) uses sign language to give some advice to householders Robin Leach and his wife Karen (right), watched by tutor Mary Whittaker

With at least twice that number of deaf people across Moray, the firefighters hope to roll out the programme over the next few months.

Mrs Leach welcomed the advice from the signing firefighters.
"It is really excellent," she said, signing through Mr McPherson. "I feel a lot more reassured now that the firefighters know sign language, and I appreciate them being able to sign. It is fantastic."
If the programme is successful in Moray, it could be rolled out across Grampian, with more firefighters being taught sign language.

The fire service also provides safety information in a number of foreign languages, including Polish, although as yet none of the firefighters has been trained in a foreign language.

Any deaf person who would like a free home fire safety visit and smoke detector can contact Elgin fire station by text at 61611 or by e-mail at info@grampianfrs.org.uk

Free fire safety advice is also available to the wider community on 01343 549060.

Jeff Daniels stars in story of a couple fighting over what's best for their deaf son

As far as actor Jeff Daniels was concerned, taking a major role in a new TV movie meant he had to learn a foreign language almost overnight. And it was a language that he had never heard. No one has, in fact, because it's utterly silent.

To land his role in the Hallmark Hall of Fame movie Sweet Nothing in My Ear, which airs tonight at 9 on CBS, WTOL-TV, Channel 11 in Toledo, Daniels had to learn American Sign Language, which is the primary means of communication for the deaf community in the United States, and it's quite different than spoken English.

ASL has its own complex system of syntax and grammar, and uses signs made with the hands as well as other movements, including facial expressions and body postures.

In Sweet Nothing, Daniels plays Dan Miller, the father of an 8-year-old son who lost his hearing at the age of 4. Daniels' character can hear, but he's learned sign language to communicate with his son, and also with his wife, Laura, who is deaf. She is portrayed by Oscar-winning actress Marlee Matlin.

In an interview from the film's set in Los Angeles, Daniels admitted that his agent "fibbed" a little bit when telling the producers that Daniels already had some experience with ASL. In truth, he had none.
"The first thing I did was go online and buy a 10-hour how-to video course," Daniels said. "I locked myself in my house in Michigan, studied those tapes, and didn't come out for days on end." (Daniels and his family live in the small town of Chelsea, Mich., about 15 miles west of Ann Arbor.)

The producers later set up a videoconference with an ASL dialogue coach, and she signed all of Daniels' lines for him. "They put a camera on her, and she stared into the lens and did all my lines really slowly," he said.

"Then I studied that tape like nothing else I've ever studied in my life. You should see my script. It looks like some wall in a Greek cave or something. It's covered in symbols - where the arms go, the hands go, the fingers go. You never saw anything like it."

Stephen Sachs, who wrote the play Sweet Nothing in My Ear and then adapted it for television, said in a separate interview that the average hearing person has no idea how intricate and subtle sign language is.

"They think it's just a straight translation into body language of what you and I are saying to each other in English," Sachs said. "Wrong. It's an entirely different language. It has its own syntax, its own sentence structure, the word order is different than it is in spoken English. If you ask an actor to speak English and sign at the same time, which is what Jeff Daniels has to do as Dan, it's like asking him to speak and juggle simultaneously.

"You may be saying, 'I want to go to the store,' while at the same time you're signing, 'Me, me store go fast.' It's just incredibly difficult."

It's conceivable that Daniels might have been able to play the role without learning ASL by using a double to do his signing for him, but he dismissed that approach entirely.
"It's that 'piano thing,' you know?" he said. "The viewer wants to believe that the actor sitting at that piano is actually playing the keys, and if he's not - if the camera cuts from a close-up face shot to a close-up hands-on-keyboard shot - then you know it's fake. And you want to change the channel.
"I wanted to get it right. I knew there'd be hundreds of thousands of people in the audience watching me very carefully, making sure I was really 'speaking' fluent ASL."

The story at the heart of Sweet Nothing is that of a loving couple whose marriage falters over opposing views of what's best for their son. But the movie also reflects a fierce real-life debate within the deaf community over a technology and a surgical procedure that can provide a limited form of hearing to deaf people.
Electronic devices called cochlear implants can be surgically placed deep within the inner ear, then connected to an external device that's attached to the outside of the skull. Unlike hearing aids, the implants don't make normal sounds louder or clearer. Instead, they bypass the damaged parts of the auditory system and directly stimulate nerves with electrical impulses, allowing individuals to detect a different type of sound.
Implanting the devices destroys any natural hearing a person may have, and if they work at all - they don't always - extensive training is needed so people can make sense of the new sounds they're hearing. Speech therapy is normally also required.

In the movie, Dan and Laura's son, Adam (played by Noah Valencia), is a healthy and happy boy who thinks that being deaf is the most natural thing in the world. But when Dan finds out about cochlear implants, he begins to think they might be the key to making Adam's life better, enabling him to hear again, at least in some fashion.
Laura, who was born to deaf parents and has known no other life, is appalled at Dan's suggestion, arguing that the invasive surgery is both unnecessary and insulting to their son. It would make Adam feel that something was wrong with him, she says, something that needed "fixing."
In an emotional confrontation, Dan argues that the implants might "give [Adam] back one of the basic human senses that nature wants all of us to have."
"But this is what nature wants," counters his wife. "Nature did it. Being deaf is as natural to Adam and me as being 'hearing' is to you."

Her perspective echoes that of many in the deaf community who don't consider deafness as a handicap or disability, but rather something that makes them unique. And that's something that's worthy of celebration, not correction.
Director Joseph Sargent handles the tricky challenge of keeping up with the often silent dialogue in the movie by providing his deaf characters with "voices." Like watching a foreign film with English subtitles, viewers of Sweet Nothing hear "audio subtitles" spoken by off-screen actors so they can tell what the deaf characters are signing.
The approach takes a little getting used to, but eventually it blends right in with the rest of the dialogue and becomes essential to understanding the movie's progression.

As the couple's disagreement intensifies, it takes a heavy toll on their marriage, and they separate and wind up facing off in a courtroom in a custody fight over Adam, each claiming to know what's best for their son.
In the midst of the legal maneuvering, though, it dawns on Dan that what he's doing may really be more for himself than for Adam. He misses talking to his son like he did when the boy could hear, and he misses hearing Adam's voice as well.
Meanwhile, Laura is dealing with a realization of her own. She loves her son the way he is, but she begins to think that in her fear of losing the special bond she has with Adam, maybe she's unfairly depriving him of the chance for a brighter future.

The two-hour movie is a warm and family-friendly tale, exposing the fears and prejudices of both the hearing and the deaf communities, and taking a fresh look at what's "normal" and what's not.

That's due in no small part to the stellar performances of its two lead actors. For Matlin, a terrific and accomplished film and television star who happens to be deaf, that's nothing unusual. After all, she won a Best Actress Academy Award for her performance in the theatrical release Children of a Lesser God.
But for the 53-year-old Daniels, the role further solidifies him as one of the most versatile actors in the film industry today. That's quite a stretch from his goofy turn in 1994's lowbrow comedy Dumb and Dumber, but hardly a revelation to those who saw him play a washed-up novelist in the touching and critically acclaimed 2005 drama The Squid and the Whale.
In Sweet Nothing, he turns in yet another performance that deserves to be seen - and heard.

Couples could win right to select deaf baby

"Deaf couples could be allowed to use embryo-screening technology and choose to have a deaf child, after a climb-down by the Government in the face of campaigning.

Under the proposed Human Fertilisation and Embryology Bill, using embryo-screening deliberately to create a child with a serious medical condition - which officials had said includes being deaf - would be illegal.

Now, however, the Department of Health has agreed to cut from the Bill any reference to deafness as a serious medical condition.

The move could pave the way for the Bill to be amended, when it passes through the Commons later this year, permitting a challenge over whether deafness should be classed as a serious medical condition for the purposes of the bill and allowing parents to pick an embryo, using IVF treatment, that will develop into a deaf child.

The Bill has already angered many MPs and church leaders because it will permit the creation of hybrid embryos, where human DNA is inserted into animal cells for research, and will also remove the requirement for a father in couples undergoing fertility treatment.

Deaf campaigners claim that, although the vast majority of deaf parents would want a child who had normal hearing, some might prefer to create a child who was also deaf and so better able to fit in with their family.

They argue that the proposed legislation is discriminatory because it gives parents the right to create "designer babies" free from inherited genetic conditions while banning disabled couples from deliberately creating a baby who shares their disability. Doctors, however, strongly oppose any plans to allow the creation of deaf babies.
The issue first came under the spotlight six years ago in America, when it emerged that a deaf couple had sought out a sperm donor with a family history of deafness. After the anger caused by that case, officials singled out deafness as being a condition that would be covered by the Bill.

Ministers, however, were shocked by the strength of opposition from members of the deaf community. Campaigners now believe the removal of the reference to deafness signals a softening of the Government's position.
They now hope that MPs will be able to amend the Bill when it is debated so that the clause banning the creation of disabled children will be dropped entirely. This, they say, would grant deaf parents equal rights with hearing parents.
Anna Middleton, a genetics counsellor involved in the campaign to change the clause, said: "It is encouraging that our debate with the Department of Health has had this impact."

Professor Peter Braude, director of the country's leading centre for pre-implantation genetic diagnosis at Guy's and St Thomas' Hospital in London, said: "I have serious concerns about deliberately selecting a embryo for deafness. This is the same as taking a normal child and deliberately making it deaf so that it can fit in with a community.

"I don't see how that can be acceptable."

Case study - 'choice should be ours'

Paula Garfield and Tomato Lichy, are at the centre of the debate over the new fertility legislation. Both are deaf – as is their daughter Molly, three.
They would like a second child, but because Paula is in her 40s, she may need IVF treatment.
They want the right to choose to have a deaf child and say it is discriminatory to ban deaf parents from doing this. Mr Lichy said:

"Being deaf is not about being disabled. It's about being part of a linguistic minority. We're proud of the language we use and the community we live in."


Take a look at the video that explains this in more detail and you will be able to see the arguments that are discussed in sign language between the parents.........it makes interesting viewing.

Text service for Deaf people to contact the police

When working with Deaf people in my interpreting job I often do home visits etc...quite a number of times there has been questions raised as to how Deaf people will contact emergency departments such as the Police....

Well local residents in Northumbria now have this opportunity by sms directly.....

Tegan Chapman reports on how this can be done...

"LOCAL deaf, hearing and speech impaired residents will now be able to contact police via text messaging. Mobile solutions specialist Dialogue Communications has provided a unique messaging service for Northumbria Police, and Northumbria Police is amongst the first to adopt this service. Using Dialogue's web-based portal, Northumbria Police has set up this mobile facility, which will allow the hard of hearing to contact the police easily.

Deaf people will no longer have to rely on someone else to report non-emergencies for them and can now text a predefined mobile number which will be directly sent to the police control room and regularly checked. Superintendent Derek Scott, of Northumbria Police explains: "We hope the service will prove to be an effective means of reporting non-emergency incidents in our local area.The mobile technology which is available to emergency services these days is rapidly expanding and we wanted to make the most of this. This demonstrates our commitment to providing the best service possible to all sections of the community.

"However, we would want to remind users that in an emergency situation they need to be able to contact the police via 999 if an immediate response is required."

The two-way SMS is a simple to use service whereby a text message is sent, it is then converted into an email and delivered to the police communications centre.The caller then receives a return SMS within seconds to say their text has been passed to the police, who will reply to this enquiry within 24 hours, with a reminder if this is an emergency you must dial 999. Any further communication can be made via email, which is automatically converted to a text message and sent to the caller. This latest service is yet another way of utilising Dialogue's community text offering.Guillaume Peersman, managing director of Dialogue UK said: "It is services like two-way messaging which can really prove beneficial to local communities."Our mobile applications offer local services a new dimension, which perhaps they hadn't considered, and because of the constantly increasing number of mobile users, it only makes sense to utilise the available technology in a positive way."

With offices in London and Sheffield, Dialogue Communications is one of the UK's fastest growing mobile service providers for interactive mobile solutions and SMS aggregation."

This is great for the Deaf community and I look forward to seeing more departments and emergency services using this technology. It needs to be remembered as well that the companies who receive the original text message from a Deaf user has had some Deaf awareness training as this will help them when understanding the grammatical differences between BSL and English. This is often apparent when reading English written by a Deaf person who is profoundly deaf and uses BSL as their first language