Understanding Deafness: Not Everyone Wants to Be 'Fixed'

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When the police showed up, there were maybe 50 protesters, most of them Deaf, outside the Omni Hotel in downtown Los Angeles. Officers stepped out of their squad cars — four in total — and spoke to the protesters through an American Sign Language interpreter. They soon left amicably, though, apparently having not found much that needed policing.

The protesters were rallying against the Listening and Spoken Language Symposium, an annual event put on by the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AGB). The symposium featured speakers, workshops, and product displays centered around the topic of, as you may have guessed, listening and spoken language. Many of the sponsors and exhibitors were affiliated with companies that sell cochlear implants, surgically implanted devices that allow a Deaf or hard-of-hearing person to hear (to varying degrees)

The protesters were angry, but acting peacefully. The majority of them were Deaf. (Yes, with a capital D. In the book America: Voices from a Culture, Carol Padden and Tom Humphries explain, “We use the lowercase deaf when referring to the audiological condition of not hearing, and the uppercase Deaf when referring to a particular group of deaf people who share a language – American Sign Language (ASL) – and a culture.”)

The AGB has a complicated history with members of Deaf culture. AGB’s stated mission is to “[help] families, health care providers and education professionals understand childhood hearing loss and the importance of early diagnosis and intervention.” Their preferred methods for doing so emphasize spoken language, and de-emphasize the use of ASL. In practice, this translates to teaching communication methods like lip reading, learning to speak (by imitating breathing patterns and mouth shapes) and, relatively recently, using cochlear implant technology.

AGB’s reasons for their oral focus depends who you ask. When reached for comment, Susan Boswell, director of communications and marketing for AGB, told me that AGB “supports the development of spoken language through evidence-based practices focusing on the use of audition and appropriate technologies.” When I asked Ruthie Jordan, a Deaf activist who runs Audism Free America and helped organize the rally against AGB, she told me the reason is much more bottom-line. (I spoke with Ruthie and other Deaf people at the rally through my interpreter, Drew Tolson, who was extremely helpful.)

Ruthie’s take is that AGB “[Makes] money...by miseducating the parents of Deaf children.” Like many others at the rally, Ruthie feels that AGB takes advantage of the fact that hearing parents may not understand how a Deaf child can lead a functional, fulfilling life. A hearing parent in this situation may be easily convinced that a cochlear implant and an oral-based approach is the only legitimate option.

AGB’s “listening and spoken language” — based approach comes out of the school of oralism, which aims to educate Deaf children through the use of oral speech and lip reading (as opposed to manualism, which advocates for the primary use of ASL in Deaf education). The goals of oralism may not sound controversial to most hearing people, but oralism has a long and problematic history.

In the 1860s, Alexander Graham Bell was a prominent oralist, and to some, an important figure in the spreading of audism — the belief that it is inherently better to be able to speak and hear. Although he surely thought otherwise, Bell had an ugly relationship with the Deaf community. Though his mother and wife were Deaf, he was intent on wiping out “hereditary deafness.” He removed Deaf faculty from schools, demanded the same schools stop their use of ASL, and advocated against “deaf intermarriage.”

Bell was also involved in the Eugenics movement, serving for a time as chairman of the board of scientific advisers to the Eugenics Record Office.

In 1880, prompted by talks between Bell and other prominent figures in deaf education, 164 delegates met for the Second International Congress on Education of the Deaf. Only one of the delegates was deaf. At the conference, a resolution was passed that banned sign language in schools, in an effort to encourage spoken language skills, and thus “[restore] the deaf-mute to society.” Other passages in the resolution urge us to “[consider] the incontestable superiority of speech over signs,” and argue that teaching deaf people to speak English will “[give them] a more perfect knowledge of language.” After its passage, schools in Europe and the United States ceased all use of sign language.

Given this history, some Deaf people feel that oralism is rooted in audism. Some argue that the sentiment of needing to “restore [Deaf people] to society” still underlies the AGB and companies affiliated with them. In fact, many Deaf people and Deaf allies, like the ones at the rally, strongly oppose the AGB and their affiliates. These people argue that the AGB and its affiliates propagate practices that harm Deaf people, all for the sake of making money. And indeed, AGB has a financial stake in the sales of cochlear implants as well as other “hearing technology.”

In addition to running an academy that trains teachers in oral-based educational methods, AGB “provides advertising opportunities to companies seeking to promote their products to individuals who are deaf and hard of hearing.” According to AGB’s website, one of their “partners in hearing” is Med-El, a large manufacturer of cochlear implants. As I mentioned earlier, the exhibitors and sponsors for their 2013 symposium include a long list of companies who sell or otherwise advocate for cochlear implant technology: Advanced Bionics, Cochlear America, the American Cochlear Implant Alliance, and many others.

Those who oppose the AGB’s practices argue that this is a large coalition of companies that stand to benefit from the sale of cochlear implants. This, they argue, is a conflict of interest, and renders any information distributed by these companies untrustworthy. Ruthie Jordan told me she feels that AGB is “miseducating the parents of Deaf children...[AGB is] earning their millions by perpetuating misinformation. They are using the ears and the bodies of Deaf people to make themselves rich.” She thinks AGB’s actions are “only related to spoken language and ‘fixing’ Deaf people ... they see Deaf people as sick, disabled, as having a deficit.”

Many within Deaf culture feel similarly. They argue that the AGB harms Deaf communities by propagating large amounts of information about oralist methods — including cochlear implants — and treating ASL as “less than” spoken English.


The controversy is sometimes difficult for hearing people to understand. Hearing people often assume that Deaf people would naturally want to take advantage of any method that could lead them to become part of the hearing world — especially cochlear implants, the most advanced hearing technology we have. In reality, that assumption is far from true. To members of Deaf culture, American Sign Language is a cultural cornerstone. Because Deaf children who receive cochlear implants at a young age will likely be educated in the oralist method, they are less likely to learn ASL during their early years, which are the most critical years of language acquisition. For some Deaf parents, that would result in a child who speaks a different language than they do. Understandably, some see this as a loss of culture- one that, in some cases, has been passed down through generations. What may seem to a hearing person like an opportunity may be seen by some Deaf people as a loss.

The debate stems from a fundamental disagreement: one group sees deafness as a disability, and the other group sees it as a culture. The trouble is that the former group holds a disproportionate amount of power, and the latter group are the ones affected.

Jeff DuPree volunteers with Audism Free America, and is a proud sixth-generation Deaf person. I spoke with him through an interpreter at the symposium. Jeff told me, “My whole life I’ve lived as a Deaf person. I married a Deaf person, I’ve worked and associated with Deaf people, and I’ve had no problem in this world. So why are organizations like this trying to take away my right to live the way I want to live, my right to raise my children the way I feel they should be raised?”

It’s not an easy question to answer. For their part, AGB maintains that they are simply advocates for the Deaf and hard of hearing. They point to the many people who, they argue, they have helped, by giving them information, grants, or general guidance related to cochlear implants and overall oral-focused education. AGB’s website states that they “[Help] to ensure that every child and adult with hearing loss has the opportunity to listen, talk and thrive in mainstream society.”

That’s not a disingenuous statement. The question is whether the affected people are receiving the full truth about “mainstream society.”

Understanding Deafness: Not Everyone Wants to Be 'Fixed' - Allegra Ringo - The Atlantic
 
Wow...I find this to be incredibly disturbing on so many levels. It explains why I have had audiologists and other doctors really advocating for these CIs and their insistence that I "strongly consider" getting CIs. I have been resistant from the start.

I was born a hearing person, I lost my hearing and now I am deaf and Deaf...and damned proud of it. Learning ASL. After reading this I will not EVER get a CI. This whole thing just pisses me off.
 
This is long years of fighting between oral vs ASL. I feel fortunately to live in 1970s and 1980s and 1990s where there are a large number of ASL users until I started to notice 2000, CI users/Orals are everywhere. Oh I hate change so I have no choice. I just go with the life whenever the things change.
 
AGB’s website states that they “[Help] to ensure that every child and adult with hearing loss has the opportunity to listen, talk and thrive in mainstream society.”
Just b/c a dhh kid can hear and talk it doesn't mean that they have full unfettered access to mainstream society (whatever THAT means) I'm HOH and have NEVER really felt a part of hearing society...I can hear and talk yes.......but that skill did and does not give me the unfettered access that AG Bell implies.......
 
I was hearing for most of my 44 years, (almost 45 now)....40 of them at any rate. I hardly ever felt a part of society, even then, period. I wasn't born to a rich family...and unless you got buckets and bags of money a person can NEVER have "...full, unfettered access to the mainstream...". That is a bullshit statement if I ever, hah, heard one.

No, this is all about a group of people who, just because they are uber-rich, think they have the right to decide who is more fit to live, or if they so deem it, die. That is what that whole Eugenics Movement is all about. That is the stipulation stated on the Georgia Guide Stones. It's ****ing evil.

Sounds to me it's time for the Deaf community to really push back hard and DEMAND that ASL be taught...and even offered as a second language in 'hearing' schools.
 
A more interesting question: why does SOME DEAF persons consider Cochlear Implants and reject being "voice off"?

Is it the rejection of the sociological belief re:"they are oppressed" by all/some hearing persons they interact with?

Is the soiological belief SOME Deaf persons ( deaf Militants?) subscribe to: society is bifuricated into "hearing VS deaf" reality?
 
What is 'voice off'? I know I don't feel oppressed just because I am deaf/Deaf. I don't understand why people who are hearing feel like d/hh people are unhappy because they can't hear. Hearing people making assumptions based on some P.O.V. without understanding the Deaf culture is not only stupid, but dangerous.
 
Voice off means not using your voice, not speaking.

Oh...ok. Well, I tend to do 'voice off' more often now. It's easier than having people wincing and/or thinking I am angry or something because I am yelling or screaming at them because I can't hear myself. I have no level control...I can't hear myself anymore so I have no idea how loud I might be talking till people flinch or my throat feels like it's being ripped out.

Whats so bad about voice off?
 
Whats so bad about voice off?

I don't think there's anything bad about it at all. I'm hearing, but whenever I get a chance to sign voice off (with friends who are Deaf, or people who want to practice ASL, or if I take a class/workshop, etc) I really love it.
 
The alternate to using one's voice-assuming one can speak-is to request the other party to "write or use ASL et al" Assuming the other knows and uses ASL et al.

Just depends on who one interacts with. As to the "fuss" engendered-how does the other party react?

Acceptable?
 
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I was hearing for most of my 44 years, (almost 45 now)....40 of them at any rate. I hardly ever felt a part of society, even then, period. I wasn't born to a rich family...and unless you got buckets and bags of money a person can NEVER have "...full, unfettered access to the mainstream...". That is a bullshit statement if I ever, hah, heard one.

No, this is all about a group of people who, just because they are uber-rich, think they have the right to decide who is more fit to live, or if they so deem it, die. That is what that whole Eugenics Movement is all about. That is the stipulation stated on the Georgia Guide Stones. It's ****ing evil.

Sounds to me it's time for the Deaf community to really push back hard and DEMAND that ASL be taught...and even offered as a second language in 'hearing' schools.


I respect your decision not to get implanted. There are many reasons to or not to, but personally I wouldn't use AGB as a reason not to. You seem to be confusing the the implant companies with not only The AGB association, but the man himself who lived in the 1800's.
 
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I was hearing for most of my 44 years, (almost 45 now)....40 of them at any rate. I hardly ever felt a part of society, even then, period. I wasn't born to a rich family...and unless you got buckets and bags of money a person can NEVER have "...full, unfettered access to the mainstream...". That is a bullshit statement if I ever, hah, heard one.

No, this is all about a group of people who, just because they are uber-rich, think they have the right to decide who is more fit to live, or if they so deem it, die. That is what that whole Eugenics Movement is all about. That is the stipulation stated on the Georgia Guide Stones. It's ****ing evil.

Sounds to me it's time for the Deaf community to really push back hard and DEMAND that ASL be taught...and even offered as a second language in 'hearing' schools.

Sinister Sites: The Georgia Guidestones - The Vigilant Citizen
 
I respect your decision not to get implanted. There are many teadons to or not to, but personally I wouldn't use AGB as a reason not to. You seem to be confusing the the implant companies with not only The AGB association but the man himself who lived in to 1800's.

There ARE a lot of uncomfortable links between the CI companies and AG BAD
 

I didn't read the entire article, I got fairly bored with the guidelines to the guidestones lol. Sounded very scifi post apocalypse stuff, but really some of their ideas aren't bad. "Couples who cannot provide a decent income and support for a child should not produce children to be a burden for their neighbor". I see absolutely nothing wrong with that statement. I'm totally down with mandatory birth control and applying for a license to have children, there are certainly too many people that are patents that should be. But anyway I did skip down to read done of the comments. OMG, the people that read, visit and comment on that site are just as crazy as the people that made and wrote the guidelines.
 
There ARE a lot of uncomfortable links between the CI companies and AG BAD

You see what you want to. Companies are in business to make money, that's not inherently evil. If a product gives access to sound, it not surprising, or even remotely underhanded or whatever ebilness you want to see, that they'd advertise somewhere that stresses and importance on oral communication. They'd be stupid not to.
 
I been to the Georgia Guide Stones...read the shit they have carved in stone there. The stones set on a conjunction of ley lines and it is set up to be a perpetual spell. A very nasty piece of ceremonial magick.

Some evil shit folks.

I was going to make this really sarcastic comment, but then I noticed your screen name. Carry on......
 
I didn't read the entire article, I got fairly bored with the guidelines to the guidestones lol. Sounded very scifi post apocalypse stuff, but really some of their ideas aren't bad. "Couples who cannot provide a decent income and support for a child should not produce children to be a burden for their neighbor". I see absolutely nothing wrong with that statement. I'm totally down with mandatory birth control and applying for a license to have children, there are certainly too many people that are patents that should be. But anyway I did skip down to read done of the comments. OMG, the people that read, visit and comment on that site are just as crazy as the people that made and wrote the guidelines.

Sure. What happens if a couple get another baby beyond the allotted amount allowed? Take the baby away? Kill it? Etc. Reminds me of China's one child policy.

Indeed it's sci-fi stuff. I ignore it. *yawn*
 
Sure. What happens if a couple get another baby beyond the allotted amount allowed? Take the baby away? Kill it? Etc. Reminds me of China's one child policy.

Indeed it's sci-fi stuff. I ignore it. *yawn*

Theoretically, not realistically, I could get behind it, but notice I said mandatory birthcontrol. Actually I've thought about this with abortion, if a woman is having a lot of them, using them like post birth control they should be court ordered to recieve BC, one of those shots that lasts 3 months or whatever, if they don't show up for appointments to get the doses, they get fined. They could do the same thing, all women, mandatory birth control. Totally theoretical though, would never happen. Anybody that thinks it could probably wears tin foil hats.
 


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