re: cochlear implants. Funny you should say that. Thirty years ago my wife and I discovered that the light of our life, one-year-old David, was deaf. I remember discussing it with an older surgeon at the hospital where I worked. He laid it on the line: A deaf child is more handicapped than a blind one because it cripples his ability to l…
re: cochlear implants. Funny you should say that. Thirty years ago my wife and I discovered that the light of our life, one-year-old David, was deaf. I remember discussing it with an older surgeon at the hospital where I worked. He laid it on the line: A deaf child is more handicapped than a blind one because it cripples his ability to learn. Research confirmed it: a deaf child would typically grow up to have a third-grade education and work in a laundry - something confirmed by memories of my neighbor at the trailer park where I lived when I was in medical school. He was deaf, about forty years old, and except for a combination of odd sounds and hand gestures was completely nonverbal - and worked in a laundry.
Hearing aids were of no benefit to our son. My wife and I began the arduous process of learning American Sign Language - and we struggled. It was totally inadequate to convey the ideas and concepts that are so beautifully expressed by the English language; for example there is no way of saying, "It looks like you have picked up a little weight." The ASL expression is, "You're fat."
But during those classes, the instructor mentioned that she knew a family 'way back in the booger-woods of West Virginia who had a deaf daughter with this thing called a "cochlear implant." Out of desperation I looked up their phone number. It was truly a bolt from the blue. Her mother was an absolute ball-o-fire, a local schoolteacher and Tiger Mom of the first order. A quick hop later, our son in tow, we talked with this family about this "CI" device. Thirty years later, I remember it vividly: Mom yelling up the stairs, "Rishona!" And from upstairs came the response: "What?" "Come down here." "OK." My God; those words still make me choke up. Mom's parting words were: "A cochlear implant will change your child from a deaf child to a hearing one."
*******************
Ableism. The Internet was just coming of age, and I had joined a newsgroup (remember those?) called, "Beyond Hearing," searching for anything - anywhere - to help me help my son. I thought everyone on the group would be delighted with my discovery, but I was met with complete, unbridled hostility, culminating with the comment from the newsgroup owner that "Deafness is not a disability; our members commonly intermarry, hoping to CREATE A DEAF CHILD. You just want to destroy the deaf culture."
I lost my mind. I replied, "Did you just say that you wanted to create a disabled child?"
And yes, I want to destroy the deaf culture. And the blind culture. And the cancer culture. And the childhood heart disease culture. All of it. And if you don't think deafness is a disability, I'll send you my address. We can meet and stand in the center of the Interstate with our backs to traffic. By God, we'll see who is disabled."
As I said, that was thirty years ago. David had his surgery, learned to talk, went to regular school, and graduated college. As for this abelist nonsense; starting that stuff with me is a very low-return enterprise. I've been to Canaan and I have no patience with such.
There is so much I can write about this but I will keep it brief.
My wife is deaf. Born with profound hearing loss, she started with hearing aids. She never learned to sign but learned to speak by Helen Beebe. As she grew older her hearing decayed. She eventually got cochlear implants.
My wife has a PhD in English and teaches at a major University, and teaches all students. She teaches writing which means her language centers of her brain are highly developed. She is published. Oxford University press came to her to ask her for a piece, and it was not about deafness. It was about a poet.
Everything you wrote about the advantages of cochlear implants is true. She loves them. She can be herself and grow and love. We have two children. She can hear them. Both of them are learning to play instruments. She can hear them.
Mainstream learning, learning to speak, and Cochlear implants didn’t take away any culture. They opened the door to her. They enable her to be herself.
Thank you for this powerful story. I am so happy for your child and family. I’ve read in the past about this stance in the deaf community and it’s always sounded more defensive and defiant than proud to me. Another point that doesn’t seem to be made is that life is plenty hard when everything works. Not every child is fortunate enough to have the supportive and resourceful family needed to combat the downsides that come with any medical challenge.
Helen Keller was once asked if she could choose to have either sight or hearing, which would she choose. She said hearing, because deafness cuts one off from humanity far more than blindness. This was a time when people had more common sense I guess.
Yes! Inability to hear has an impact on processing skills in the brain. It is detrimental to one's life and limits what one can do because the brain won't develop or will lose some functioning.
I’m a retired speech pathologist and completed my undergraduate and graduate training in the mid-70’s, when cochlear implants were in their infancy.
There was a training program for deaf kids called, IIRC, “total language.” It discarded ASL and substituted a signing program called Seeing Essential English. Unlike ASL -- which is basically its own language -- SEE used signs to copy standard English, such as adding word endings such as “ing” or “-ed,” etc. SEE also followed English syntax (grammar) rules.
Along with this signing program, kids were taught to verbally speak as best as possible. The whole idea was to allow them access into the hearing world and society.
It died on the vine, killed by the militant “Deaf” community.
Thank you for sharing your story. I have one of my own.
At 2 years old, just as he was starting to talk, my younger brother contracted bacterial meningitis and ended up in the pediatric ICU for two months. His neurologist described my brother as his “sickest patient who lived”. He lost his hearing and much of his cognitive development.
My brother received a cochlear implant a couple years later, and used it faithfully for many years as he attended local public schools. Our entire family learned some sign language, but we generally preferred spoken communication and hoped the implant would be sufficient for communication. However, in high school my brother attended a state-sponsored academy for deaf and blind children and gradually stopped using the implant as he integrated fully into the Deaf community.
A few years ago he married his childhood sweetheart, who is congenitally deaf. They now have a beautiful daughter with normal hearing, and recently he has expressed an interest in restarting speech therapy with the implant. That option is not available to his wife though, so I wonder how she feels about it. They live a happy and normal middle-class American lifestyle, without hearing.
Personally, I feel conflicted. I have some guilt about never fully learning sign language so I can communicate with my brother, but I also wonder what could have been if he’d continued using the implant. His best friend, also a cochlear implant recipient, delivered an eloquent speech at the wedding and seems at ease among both hearing and the Deaf.
We were told by the audiologist in Richmond that the surgery was the tiniest part of the process. Speech therapy was more important than anything, and since he was already getting what he needed by pointing and grunting, if we let him give into normal laziness, the implant would fail. He was already two years behind when the device was placed.
I give his mother credit for working with him, as well as the speech therapist. When he was about four, she told me, "David could be the poster child for the cochlear implant. I am used to dealing with hearing-aid kids; I have never had a patient with an implant. He is progressing so quickly. I realized today that if I close my eyes, I can't tell his speech from that of a normal child. I hate to see him go, but I have nothing further to offer him."
There was another child in his class, Kendra - daughter of a single mother from the projects. Since welfare would implant her for free, and she was so tough to deal with for the mom, who was "dating" all the time and didn't want to give up her freedom, she decided to have the child implanted.
It was the perfect study: subject and control. The little girl never got much therapy or special attention. The last I heard from her, she was herself a single mom - and deaf as a post.
Exactly. My one up-close-and-(more or less)-personal association was with a deaf community in a large city through friendship with a young man who had a vocation to work with deaf persons at large. After attending a few community functions, I commented upon how self-sufficient the group was as a whole... my guide pointed out that what I had experienced was, uh, (what would now be called) a privileged group. He wasn't keen on exposing any other kind... this back in 1977.
Our case is much more similar to yours than the latter one you mentioned--no shortage of love and support in my family. However, I believe the overall neurological damage from the illness also worked to stunt my brother’s speech development, so he never acquired natural-sounding speech.
“It was totally inadequate to convey the ideas and concepts that are so beautifully expressed by the English language; for example there is no way of saying, ‘It looks like you have picked up a little weight.’ The ASL expression is, ‘You're fat.’”
I didn’t know this, but it explains a lot to me. Except for those who went deaf in their old age, all the deaf people I’ve met have been very blunt, with little to no sense of how to phrase things sensitively. It’s off-putting to other people, who already find it awkward or difficult communicating with deaf people.
I remember when “retarded” first became the verboten “R-word” that it was hilariously ironic. How was a retarded person going to be offended or have hurt feelings unless someone carefully explained and instructed them to be offended?
Sticks and stones. What a bunch of weaklings we’ve raised.
Outstanding. You went where even a so-unpopular kid as I was reluctant to go. Economics. The the overwhelming cost benefit of (ie) modern cataract surgery vs accommodating blindness. Let she who can afford to go against that do so. And leave the rest of us alone.
Thank you for your story. If people want help, for whatever reason, it should be available and if they don't, that's fine too. Everyone should accept each others choices and experiences. It's called not judging and if we realized that we are literally all limbs of the same tree we would stop judging and instead accept, support, learn from, and love others instead of judging them.
I have been wearing hearing aids since 2014. I needed them in 1978. I am thankful that I can now fully engage in conversations and not put myself in danger when I am out in the world.
As a lifelong math geek and electronic guy, I see the CI as one of medicine's Great Leaps Forward. Since the eardrum can only do one thing - move in or out - what you have is essentially one wire carrying data. But that single wave is the sum of all the different frequencies that strike it, and after running that wave through an amplifier - a protein called prestin that changes shape with every tiny vibration, amplifying that vibration 200 times, the native ear performs a Fourier transform - essentially calculus - splitting that one wave into literally thousands of its constituent frequencies and feeding each one to a different nerve fiber. The CI must do all that, too, and has gone from a cigarette-pack sized device to one that fits behind the ear.
I had the privilege of meeting the engineer who invented the whole design in cooperation with an Australian doctor. The two of them worked for decades and never let up. I, my son, and many others owe them a debt of gratitude that can never be adequately repaid.
The world is full of irrational crazies and those who say don't cure the handicapped are crazy. They won't debate you but they will yell at you and call you names.
The moron P/C call the deaf "audially challenged". I say they are full of shit. The deaf call themselves "deaf". The blind call themselves "blind".
I know that from experience. My father was deaf and he called himself deaf. I had a good friend who was blind. Guess what he called himself? You guessed it, blind!
These left wing loons are dangerous and they disgust me. These are people who would complain if they were hanged with a new rope.
My father was lucky. In the 1930s they invented hearing aids and he could hear with them.
Lori, I am in that same boat with you! Except hearing aids only allow me to understand about 2/3 of spoken words. And it is getting progressively worse! But at MY age, 72, the solution of cochlear implants would be a solution of diminishing returns. By the time I would have the surgery, and learned and adapted to the implants, I would be near end of life. I'll just cobble along for now...
I dunno, Mr Moore. Back when I was only 72 I questioned my dentist about the economic wisdom, at my age, of an implant vs cheaper fixes. Cut to the chase, I went with the implant. Never regretted it. (Granted I know nothing of cochlear implants, particularly the non-economic issues that you raise.) Be well.
re: cochlear implants. Funny you should say that. Thirty years ago my wife and I discovered that the light of our life, one-year-old David, was deaf. I remember discussing it with an older surgeon at the hospital where I worked. He laid it on the line: A deaf child is more handicapped than a blind one because it cripples his ability to learn. Research confirmed it: a deaf child would typically grow up to have a third-grade education and work in a laundry - something confirmed by memories of my neighbor at the trailer park where I lived when I was in medical school. He was deaf, about forty years old, and except for a combination of odd sounds and hand gestures was completely nonverbal - and worked in a laundry.
Hearing aids were of no benefit to our son. My wife and I began the arduous process of learning American Sign Language - and we struggled. It was totally inadequate to convey the ideas and concepts that are so beautifully expressed by the English language; for example there is no way of saying, "It looks like you have picked up a little weight." The ASL expression is, "You're fat."
But during those classes, the instructor mentioned that she knew a family 'way back in the booger-woods of West Virginia who had a deaf daughter with this thing called a "cochlear implant." Out of desperation I looked up their phone number. It was truly a bolt from the blue. Her mother was an absolute ball-o-fire, a local schoolteacher and Tiger Mom of the first order. A quick hop later, our son in tow, we talked with this family about this "CI" device. Thirty years later, I remember it vividly: Mom yelling up the stairs, "Rishona!" And from upstairs came the response: "What?" "Come down here." "OK." My God; those words still make me choke up. Mom's parting words were: "A cochlear implant will change your child from a deaf child to a hearing one."
*******************
Ableism. The Internet was just coming of age, and I had joined a newsgroup (remember those?) called, "Beyond Hearing," searching for anything - anywhere - to help me help my son. I thought everyone on the group would be delighted with my discovery, but I was met with complete, unbridled hostility, culminating with the comment from the newsgroup owner that "Deafness is not a disability; our members commonly intermarry, hoping to CREATE A DEAF CHILD. You just want to destroy the deaf culture."
I lost my mind. I replied, "Did you just say that you wanted to create a disabled child?"
And yes, I want to destroy the deaf culture. And the blind culture. And the cancer culture. And the childhood heart disease culture. All of it. And if you don't think deafness is a disability, I'll send you my address. We can meet and stand in the center of the Interstate with our backs to traffic. By God, we'll see who is disabled."
As I said, that was thirty years ago. David had his surgery, learned to talk, went to regular school, and graduated college. As for this abelist nonsense; starting that stuff with me is a very low-return enterprise. I've been to Canaan and I have no patience with such.
There is so much I can write about this but I will keep it brief.
My wife is deaf. Born with profound hearing loss, she started with hearing aids. She never learned to sign but learned to speak by Helen Beebe. As she grew older her hearing decayed. She eventually got cochlear implants.
My wife has a PhD in English and teaches at a major University, and teaches all students. She teaches writing which means her language centers of her brain are highly developed. She is published. Oxford University press came to her to ask her for a piece, and it was not about deafness. It was about a poet.
Everything you wrote about the advantages of cochlear implants is true. She loves them. She can be herself and grow and love. We have two children. She can hear them. Both of them are learning to play instruments. She can hear them.
Mainstream learning, learning to speak, and Cochlear implants didn’t take away any culture. They opened the door to her. They enable her to be herself.
Your child was blessed to have parents with common sense.
Well said.
Thank you for this powerful story. I am so happy for your child and family. I’ve read in the past about this stance in the deaf community and it’s always sounded more defensive and defiant than proud to me. Another point that doesn’t seem to be made is that life is plenty hard when everything works. Not every child is fortunate enough to have the supportive and resourceful family needed to combat the downsides that come with any medical challenge.
Helen Keller was once asked if she could choose to have either sight or hearing, which would she choose. She said hearing, because deafness cuts one off from humanity far more than blindness. This was a time when people had more common sense I guess.
Amen.
Yes! Inability to hear has an impact on processing skills in the brain. It is detrimental to one's life and limits what one can do because the brain won't develop or will lose some functioning.
I’m a retired speech pathologist and completed my undergraduate and graduate training in the mid-70’s, when cochlear implants were in their infancy.
There was a training program for deaf kids called, IIRC, “total language.” It discarded ASL and substituted a signing program called Seeing Essential English. Unlike ASL -- which is basically its own language -- SEE used signs to copy standard English, such as adding word endings such as “ing” or “-ed,” etc. SEE also followed English syntax (grammar) rules.
Along with this signing program, kids were taught to verbally speak as best as possible. The whole idea was to allow them access into the hearing world and society.
It died on the vine, killed by the militant “Deaf” community.
Thank you for sharing your story. I have one of my own.
At 2 years old, just as he was starting to talk, my younger brother contracted bacterial meningitis and ended up in the pediatric ICU for two months. His neurologist described my brother as his “sickest patient who lived”. He lost his hearing and much of his cognitive development.
My brother received a cochlear implant a couple years later, and used it faithfully for many years as he attended local public schools. Our entire family learned some sign language, but we generally preferred spoken communication and hoped the implant would be sufficient for communication. However, in high school my brother attended a state-sponsored academy for deaf and blind children and gradually stopped using the implant as he integrated fully into the Deaf community.
A few years ago he married his childhood sweetheart, who is congenitally deaf. They now have a beautiful daughter with normal hearing, and recently he has expressed an interest in restarting speech therapy with the implant. That option is not available to his wife though, so I wonder how she feels about it. They live a happy and normal middle-class American lifestyle, without hearing.
Personally, I feel conflicted. I have some guilt about never fully learning sign language so I can communicate with my brother, but I also wonder what could have been if he’d continued using the implant. His best friend, also a cochlear implant recipient, delivered an eloquent speech at the wedding and seems at ease among both hearing and the Deaf.
We were told by the audiologist in Richmond that the surgery was the tiniest part of the process. Speech therapy was more important than anything, and since he was already getting what he needed by pointing and grunting, if we let him give into normal laziness, the implant would fail. He was already two years behind when the device was placed.
I give his mother credit for working with him, as well as the speech therapist. When he was about four, she told me, "David could be the poster child for the cochlear implant. I am used to dealing with hearing-aid kids; I have never had a patient with an implant. He is progressing so quickly. I realized today that if I close my eyes, I can't tell his speech from that of a normal child. I hate to see him go, but I have nothing further to offer him."
There was another child in his class, Kendra - daughter of a single mother from the projects. Since welfare would implant her for free, and she was so tough to deal with for the mom, who was "dating" all the time and didn't want to give up her freedom, she decided to have the child implanted.
It was the perfect study: subject and control. The little girl never got much therapy or special attention. The last I heard from her, she was herself a single mom - and deaf as a post.
Exactly. My one up-close-and-(more or less)-personal association was with a deaf community in a large city through friendship with a young man who had a vocation to work with deaf persons at large. After attending a few community functions, I commented upon how self-sufficient the group was as a whole... my guide pointed out that what I had experienced was, uh, (what would now be called) a privileged group. He wasn't keen on exposing any other kind... this back in 1977.
Our case is much more similar to yours than the latter one you mentioned--no shortage of love and support in my family. However, I believe the overall neurological damage from the illness also worked to stunt my brother’s speech development, so he never acquired natural-sounding speech.
“It was totally inadequate to convey the ideas and concepts that are so beautifully expressed by the English language; for example there is no way of saying, ‘It looks like you have picked up a little weight.’ The ASL expression is, ‘You're fat.’”
I didn’t know this, but it explains a lot to me. Except for those who went deaf in their old age, all the deaf people I’ve met have been very blunt, with little to no sense of how to phrase things sensitively. It’s off-putting to other people, who already find it awkward or difficult communicating with deaf people.
Yep. You might say they're disabled.
No Jim, they are physically challenged. Geez!
Calling the crippled, physically challenged doesn't make the crippled leap out of their wheel chairs and shout, "I'm cured!"
PC assholes!
Reminds me of the old joke about the faith healer, the guy with a lisp, and the old lady on crutches.
I remember when “retarded” first became the verboten “R-word” that it was hilariously ironic. How was a retarded person going to be offended or have hurt feelings unless someone carefully explained and instructed them to be offended?
Sticks and stones. What a bunch of weaklings we’ve raised.
Outstanding. You went where even a so-unpopular kid as I was reluctant to go. Economics. The the overwhelming cost benefit of (ie) modern cataract surgery vs accommodating blindness. Let she who can afford to go against that do so. And leave the rest of us alone.
Thank you for your story. If people want help, for whatever reason, it should be available and if they don't, that's fine too. Everyone should accept each others choices and experiences. It's called not judging and if we realized that we are literally all limbs of the same tree we would stop judging and instead accept, support, learn from, and love others instead of judging them.
I have been wearing hearing aids since 2014. I needed them in 1978. I am thankful that I can now fully engage in conversations and not put myself in danger when I am out in the world.
As a lifelong math geek and electronic guy, I see the CI as one of medicine's Great Leaps Forward. Since the eardrum can only do one thing - move in or out - what you have is essentially one wire carrying data. But that single wave is the sum of all the different frequencies that strike it, and after running that wave through an amplifier - a protein called prestin that changes shape with every tiny vibration, amplifying that vibration 200 times, the native ear performs a Fourier transform - essentially calculus - splitting that one wave into literally thousands of its constituent frequencies and feeding each one to a different nerve fiber. The CI must do all that, too, and has gone from a cigarette-pack sized device to one that fits behind the ear.
I had the privilege of meeting the engineer who invented the whole design in cooperation with an Australian doctor. The two of them worked for decades and never let up. I, my son, and many others owe them a debt of gratitude that can never be adequately repaid.
The world is full of irrational crazies and those who say don't cure the handicapped are crazy. They won't debate you but they will yell at you and call you names.
The moron P/C call the deaf "audially challenged". I say they are full of shit. The deaf call themselves "deaf". The blind call themselves "blind".
I know that from experience. My father was deaf and he called himself deaf. I had a good friend who was blind. Guess what he called himself? You guessed it, blind!
These left wing loons are dangerous and they disgust me. These are people who would complain if they were hanged with a new rope.
My father was lucky. In the 1930s they invented hearing aids and he could hear with them.
Lori, I am in that same boat with you! Except hearing aids only allow me to understand about 2/3 of spoken words. And it is getting progressively worse! But at MY age, 72, the solution of cochlear implants would be a solution of diminishing returns. By the time I would have the surgery, and learned and adapted to the implants, I would be near end of life. I'll just cobble along for now...
Don't short change yourself. You may live another 20 years.
I dunno, Mr Moore. Back when I was only 72 I questioned my dentist about the economic wisdom, at my age, of an implant vs cheaper fixes. Cut to the chase, I went with the implant. Never regretted it. (Granted I know nothing of cochlear implants, particularly the non-economic issues that you raise.) Be well.
Wow. What a powerful response. Thank you so much for your story and your fight for your son and others like him.