Ethics and Deafness: Dianrez Weighs In

 

Dianrez asked some thought-provoking questions:

Take the child who was born deaf and admire how physically perfect he is. He runs, skips, analyzes, critically examines, laughs and cries. What, you say he is not perfect? Because he can't hear?

Me: Why shouldn't he ALSO be able to hear?

Take your own motives. You want to give him what you already have and hold precious...the ability to hear and communicate. What, you think he won't be able to do so otherwise?

Me: Without his amplification he would not have been able to communicate with his peers...or hear.

Isn't a different method of "hearing" and communicating just as good? Why or why not? Be aware that your own prejudices are coloring your thoughts.

Me: There is no different literal meaning of "hearing" - you hear or you do not. Figuratively speaking, I could "go there," but I'm focusing on the literal. Additional methods of communicating are always welcome. I am not prejudice in regard to deafness, I treat my child as an individual and address his personality and needs.

Take the child's own motives. Will he appreciate the artificial hearing, an imperfect and incomplete method of communication, being surgically implanted with an unknown level of risk and unknown future of complications? Or will he appreciate being cherished as he is, healthy and Deaf, and given all the educational advantages that you would give him anyway using other methods?

Me: I cannot comment on a new mother's situation without knowing about her family or the specific child. Given where the technology is at this point in regard to the ABI, I would have to really be convinced to have that operation performed on my child. In regard to our experience with Jordan, he has always "heard artificially," has only complained when the batteries die and is utterly cherished for the person he is...healthy, Deaf, American, Italian, big brother, beach-volleyball player, stubborn adolescent middle school student.

Will he appreciate a possibly marginal relationship with the hearing world, always a little bit off in timing and comprehension in many situations, and/or will he also enjoy the rich and emotionally satisfying interaction with other Deaf people?

Me: He doesn't "appreciate" his relationship with the hearing world, because it is all he has ever known. We take many things for granted. He enjoys rich and satisfying interactions with other deaf individuals all of whom are amplified and speak. One day, I am sure he will learn sign language and explore the Deaf community, that is not our reality at the current time.

Will he end up a poster child for surgery, forever justifying and demonstrating its benefits; will he become a fully featured hearing person with no thought to the upkeep, maintenance and surgical replacements he will have to go through? Will he have time and energy left over to become a whole person in himself?

Me: He is already a "poster child" of his own free will, he doesn't need me to express his thoughts...he has a voice of his own. And people do not need me to translate his words any longer. We'll deal with the surgical replacements when the time comes, no one said this was an easy process. Is anyone ever really a whole person...I'm still searching for me - I think that's what makes life a continual growth process.

In giving him a gift with many qualifications, are you actually trying to impose an idealized version of the child you wanted, or a miniature version of yourself? Is it so hard to accept him for the way he was born, an intelligent Deaf child with huge unexplored potential?

Me: *smile* God forbid that I create a mini-me. If you limit his ability to hear and receive the greatest number of messages possible (many of which are received auditorily), you limit unexplored potential.

These questions may seem harsh, but consider that the teenager you will have may ask them. Certainly most Deaf people think these, especially after they are given aids or surgery by the people in their families.

Some parents will just dismiss this and merrily go on, confident that their research and calculations of the pitfalls and risks are correct...after all, what do deaf people know about the hearing world?

Me: Rhetorical question?

Indeed, what do you know about the deaf child himself? What do you know of his world after he grows up?

Me: I only know my deaf child and he's teaching me more and more on a day to day basis. I will always be a part of his world - I'm a meddling mamma.

Personally, I have found myself moderating my opinions on surgical treatment of deaf children with the increasingly vocal parent and implantee community coming to the forefront in recent months.

Me: This gives me great pleasure! *smile*

Then an article comes up that talks about brain surgery and I wonder again about the extent to which people will go to in order to achieve their ideal child.

Me: I agree 100% (It took me the whole comment to get here, but I agree)
However...a parent has the right to choose.

Ethics and Deafness -Carried Away by Technology

 

Hmm. 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.