“Fixing” the Deaf–or Destroying the Deaf Community?
How does it feel to see the future generation of our Deaf Community being ‘fixed’ and channeled to the hearing culture? It has to feel terrible for culturally deaf people, after many generations of deaf individuals, to see deafness being tackled and systematically cured, or as they see it, destroyed.
It is a wonderful culture. It’s really too bad that hearing people don’t know how vibrant and passionate Deaf people feel about their own language and how expressive ASL is. I am sorry that the majority seem to feel ASL is ‘dangerous’ to their deaf babies and children.
Traditionally Deaf people have been oppressed. Their deafness hasn’t been embraced. Historically the majority of deaf kids from hearing families have migrated to the Deaf Community, either during their childhood years or after they achieved adulthood. Hearing aids were declared the miracles, with the expectation they will help restore the hearing of deaf kids. Mostly that hadn’t materialized with the exception of hard of hearing and a few oralists. Its language, ASL, has been bastardized by SEE, SEE II, TC, and SC. Hence the resistance of the Deaf Community in being “fixed”. The majority of Deaf people already feel normal. After adaptations that have gone on over the generations, they have evolved to become a respectable Deaf Community, with its rich language, heritage, traditions, and folklore, and so forth.
Yet more and more deaf babies and children are being “fixed”, with the newest invention, cochlear implants–an invasive surgical procedure, unlike hearing aids. This method has some side effects. The percentage is hard to determine…perhaps 40% of the deaf kids are already implanted, but that’s just a rough guess. Afterwards, intensive AVT and heavy parental involvement are needed. The success rate are still unknown, though preliminary data indicate some success. However, it won’t be known until the second generation of c.i. kids become teenagers and adults.
It sure sucks to be feared so much and face the possibility that the Deaf community possibly dwindling due to medical advancements.
We can only try to build bridges to the hearing parents and help them understand us and vice versa.
How does it feel to see the future generation of our Deaf Community being ‘fixed’ and channeled to the hearing culture? It has to feel terrible for culturally deaf people, after many generations of deaf individuals, to see deafness being tackled and systematically cured, or as they see it, destroyed.
It is a wonderful culture. It’s really too bad that hearing people don’t know how vibrant and passionate Deaf people feel about their own language and how expressive ASL is. I am sorry that the majority seem to feel ASL is ‘dangerous’ to their deaf babies and children.
Traditionally Deaf people have been oppressed. Their deafness hasn’t been embraced. Historically the majority of deaf kids from hearing families have migrated to the Deaf Community, either during their childhood years or after they achieved adulthood. Hearing aids were declared the miracles, with the expectation they will help restore the hearing of deaf kids. Mostly that hadn’t materialized with the exception of hard of hearing and a few oralists. Its language, ASL, has been bastardized by SEE, SEE II, TC, and SC. Hence the resistance of the Deaf Community in being “fixed”. The majority of Deaf people already feel normal. After adaptations that have gone on over the generations, they have evolved to become a respectable Deaf Community, with its rich language, heritage, traditions, and folklore, and so forth.
Yet more and more deaf babies and children are being “fixed”, with the newest invention, cochlear implants–an invasive surgical procedure, unlike hearing aids. This method has some side effects. The percentage is hard to determine…perhaps 40% of the deaf kids are already implanted, but that’s just a rough guess. Afterwards, intensive AVT and heavy parental involvement are needed. The success rate are still unknown, though preliminary data indicate some success. However, it won’t be known until the second generation of c.i. kids become teenagers and adults.
It sure sucks to be feared so much and face the possibility that the Deaf community possibly dwindling due to medical advancements.
We can only try to build bridges to the hearing parents and help them understand us and vice versa.
January 15th, 2008 at 5:12 pm
You typed, “It’s really too bad that hearing people don’t know how vibrant and passionate Deaf people feel about their own language and how expressive ASL is.”
The hearing community actually knows how vibrant and passionate the deaf community feels, however the deaf community filters this vibrancy and passion through hate, anger, bitterness, attacks and other negative means to the point that hearing parents run the other direction.
Any well meaning and responsible (hearing) parent would take the time to research as much as they could upond finding out their child is deaf. However all the messages thrown out by the deaf community itself are negative. No wonder they run to oralism and CI’s.
The deaf community needs to stop spouting its anger in negative ways and harness that anger into positive ways to embrace the challanges ahead and come together to show the world that being deaf isnt about being bitter and angry, its about a strong culture with a beautiful language.
Until then its not CI’s that will destroy our community, its the anger!
January 15th, 2008 at 5:22 pm
Two reasons.
1. The failure or inability of the deaf organizations to place information at the finger tips of the hearing parents (no brochures in doctor’s offices or even in audiologists office.) Illinois School for the Deaf placed their brochures and is reaping the benefits. What’s wrong with the organizations? AGBAD is doing their darnest.
2. The unwillingness of the Deaf community to unite to counter AGBAD’s publicity campaigns.
In Sweden, the CIs are required to be fluent in Swedish sign language and parents are required to have at least 250 hours in sign language alongside with the non-CIs. End result – the unity of the Deaf community in Sweden. California’s team went there to look at their approach and they find they are very successful.
January 15th, 2008 at 5:41 pm
Lolypup,
You may be right, but one thing most hearing parents do not realize is that CI also hurt Deaf community. In effect, you’re telling us to dismiss our feelings, in other words, “shut up,” because it’s out of our hands.
We want you to STOP trying so hard to FIX us. At some point, you’re going to have to acknowledge that the majority of Deaf people don’t want to be fixed, they’re fine that way. This mentality with fixing deafness is bad as the Deaf’s “anger” as you call it on CI and oralism issues. Why can’t you admit that?
This self-righteous attitude of yours is what bothering us so much, that eventually our anger gets best of us. If you don’t want us to be angry and bitter, then back off, don’t try to shove CI issue down our throats. We don’t like that. And please do stop with this strange mentality of obsession on fixing deafness, we don’t need that. Learn to accept deafness and embrace it openly, don’t be ashamed of your deafness.
January 15th, 2008 at 5:44 pm
The Deaf community will not disappear, even when 100% of all deaf babies are implanted. The biggest reason for this is that CIs are still an inexact science and does not benefit all equally.
Those that eventually seek the support of the existing Deaf community may bring alienation and oppression from their failure to benefit from CI’s. If they have not been fortified with ASL and a cultural validation, they could be just as angry as today’s former oralists are.
Whether this will result in a new subgroup of Deaf people dealing with problems of being half-hearing, half-deaf and belonging to neither, still remains to be seen. They will be especially needy of support from people who understand and embrace them as they are.
We must consider that this generation’s needs and anger could fragment the strong community spirit that we have developed over several generations.
We must be strong enough to offer the CI generation the support and emotional validation that has given us strength in the past and at the same time encourage the benefits they are able to derive.
January 15th, 2008 at 5:49 pm
I’ve met quite a few deaf people that are deaf of deaf that have stated openly that if they were hearing, more doors would open for them in this world. These people know what it takes to get ahead easier. This may be one of the reasons why the idea of “fixing” deaf is applealing to many hearing parents. After all, it’s their world. In addition to wanting success for their child, they also want a close relationship with their child throughout the child’s life without “losing them to the deaf world.” I really doubt deaf culture will die, nor do I believe ASL will ever go away. It might dwindle a bit or maybe even more. It may even evolve to something better. While I wouldn’t fix my child(if I had a deaf child), it is NOT hard to understand why some parents would want to. ASL advocates should just continue to advocate ASL with compassion and warmth; and at the same time, try to refrain from appearing to be hostile.
January 15th, 2008 at 5:53 pm
I doubt Deaf Community will die. There will always be Deaf people who cannot benefit from the medical tecnology. There are also deaf families who want to maintain their lines of deaf genetics.
So many Deaf people have been deeply hurt. It may help the hearing parents to understand the reasons so they can avoid making the same mistake with their kids. As it appears, many times ‘fixing’ have harmed the deaf kids, including some of the first generation of c.i. kids, though the parents intended to help the kids have better tools. Time will tell if this is repeated or not with the second c.i. generation.
January 15th, 2008 at 5:54 pm
What the deaf community deems as “fixing” many parents view as giving their child options.
Plenty of cochlear implant children use sign in addition to speech. Being able to move between the oral society at large and the deaf community is an option for those who choose to.
Deaf organizations should focus less on suing and “countering” AG Bell and its mission and focus more on fundraising, education awareness, etc. Mud-slinging doesn’t work and leaves a bitter taste in the mouths of the bystanders, the parents who are watching, learning and deciding.
Show us why our kids should want to be part of the deaf community. What are the benefits? Saying that ASL is their natural language and they should be members of the community because they’re deaf is not enough.
January 15th, 2008 at 6:07 pm
W. David Samuelsen– As a late-deafened adult I am keenly aware that CI’s and the best hearing aids can only do so much. You’re so right about the need for ASL.
A month or two ago I suggested on another blog in DeafRead that Deaf organizations should consider some outreach to the newly deafened, who are in desperate need of help as their hearing declines. I talk, but I NEED others to sign back to me– YET I DON’T UNDERSTAND ASL because I grew up talking as a hearing person. It feels like the rug has been pulled out from under me!!
A few individuals posted encouragement– that they wished they could help as individuals, but there was also some extreme criticism. In a nutshell I was told I should join ALDA and HLAA– two organizations for late-deafened people– neither of which adequately addresses communication needs if you’re severely or profoundly deafened. Basically I am viewed as “hearing” and therefore I belong with “late-deaf” people, not culturally deaf people. The message is– STAY OUT!! Few at the ADLA and HLAA meetings use ASL. Cochlear Implants are the norm. How am I supposed to learn to communicate in ASL with Deaf people in such a hostile environment??
Believe me, MOST late-deafened people do NOT RUSH out to be implanted immediately. We put it off. But there’s simply NO support for us in the Deaf community, whereas the HEARING ARE supporting us. They encourage us to get that implant to help us hear and communicate.
I realize I’m off track and not talking about children. It’s just that I sit in the same waiting rooms as hearing mothers of little Deaf children. They see me with hearing aids talking. I’m friendly. It gives them hope. They’re looking for support. They will gravitate to whoever has a smile and gives them encouragement about their child’s future.
The Deaf need to do POSITIVE OUTREACH.
Anger, criticim and resentment isn’t going to win over a hearing mom.
January 15th, 2008 at 6:40 pm
People need to stop whining and start adapting to the changes and to the future. I adapted so can others.
Richard
January 15th, 2008 at 7:09 pm
Mishka,
Another attempt at further dividing the deaf world with negative views. Way to go!!
Its no wonder there is division.
What is so wrong with a parent deciding what they want for their own child. Right, wrong or indifferent it is their decision too make, they are the one’s who have to live with it.
January 15th, 2008 at 7:18 pm
Just telling the truth how some of Deaf Community sees this.
My intention is to open communication between two different worlds so they can understand each other better. Pretending that everything is just dandy fine isn’t going to improve communications between the two communities.
And it’s not just the parents who have to live with the consequences of their decisions, their deaf children are affected, too. Hence the reason why Deaf Community is concerned because so many of them went through oral method which ends up failing them. From their own experience, they know that oral educators and others are not always honest with the hearing parents. Whether this is the case or not nowadays is yet to be determined. But some deaf kids are still ending going to Deaf schools, so that’s something to keep in mind.
January 15th, 2008 at 7:35 pm
I agree. The vicious hundred-year cycles of listening to dishonest oral educators & doctors and taking advantages of parents’ grievance need to end.
January 15th, 2008 at 7:40 pm
It is not time to hear,..
It is time to listen.
I would hope that hearing parents are capable of listening to those who the decisions have affected.
Mishka,
Thank you for the continued elaboration.
Jeffrey
January 15th, 2008 at 7:41 pm
all discussions here and in last several posts are all old news. the deaf community is always portrayed as a group of angry people, etc etc. same, same, same. there are many positive aspects about the deaf community, but they chose to ignore those – they are insignificant to them anyway.
seriously, i’m just wasting my time even commenting here. the discussions do seem to go to anywhere.
January 15th, 2008 at 7:43 pm
shoots, i forgot to type “not” in the past paragraph:
seriously, i’m just wasting my time even commenting here. the discussions do “NOT” seem to go to anywhere.
January 15th, 2008 at 7:46 pm
Doctors, audiologists and few others kept telling hearing parents that ASL is BAD for deaf kids. BAD?
That is a big problem for us divide all. That is really sad. We struggle to prove them wrong. We are frustrated with Doctors, audiologists and few others for NOT listening to us since there are many ways for deaf kids to get GOOD education! I never understand at all, they do not listen but they only want to listen to whom??? MONEY!!!!!
January 15th, 2008 at 9:00 pm
Yeah, we need to get those hearing parents of grown deaf adults here to talk about their experiences! So that the young parents can listen to the wise and older hearing parents.
Correct me if I am wrong but I have not yet seen any older hearing parent make comments about their adult deaf child in Deafread.
We are seeing history repeat itself over and over again and no one seems to be learning anything from it. Why?
We need to put a stop to this vicious cycle and make sure that the history does not repeat again.
January 15th, 2008 at 9:06 pm
Amen.
Thank you, Mishka
January 15th, 2008 at 9:18 pm
I will be happy to outreach to Kim (I love her blogsite!) I want to be her friend. I want to help them. I respect Hearing parents’ choice but I would be happy to help them. I used to teach ASL classes for five years and I was there for a hearing mother of a young girl who just had a hearing loss. We need to remind a lot of deaf people to be there for others and I know most of hearing parents and late-deafened adults or kids are beautiful people. It will be great experiences for both of the sides when they’re in unity.
I love being Deaf , but I sometimes wonder what it is like if I have CI. I could read aloud or sing some songs to my children. I don’t mind if they choose to have CI but also to use ASL.
I think it’s all about it for now.
January 15th, 2008 at 10:10 pm
Picard90,
Its not me trying to shove CI onto anyone. I am just pointing out the obvious, the problems and the issues. I myself am profoundly deaf and fluent in ASL. Im deeply commited and involved with the deaf community and I for one dont want to see the community fade away.
However Im pointing out the obvious and your anger and attack on me another deaf person underscores my point. We need to come together not continue to attack and point fingers at each other or even at the hearing community.
CI as well as any other new technology for deafness is here to stay we cant fight it, so we have to find a way to work with it.
January 15th, 2008 at 10:15 pm
I want to share a true story that happened when I was a child. The oral program and the TC program were discussing about merging the parents group into one for some reason that’s forgotten now. The parents were all in an uproar, especially the oral parents.
One of the parents of an oral deaf child stood up at that meeting and said, “If I ever see my son signing, I am going to hang him by his thumbs up high at Calder Plaza at high noon!”
This happened in my lifetime, and I’m not even thirty years old yet. This is *not* something that happened generations ago.
And fairly recently – less than a decade ago or so, a school administrator in Michigan was having a dispute with a Deaf family about sending the Deaf children to the state school of the Deaf. The Deaf family ended up moving out of the district and to the area where the state school was located.
That school administrator was reportedly so furious about the family moving, that she said, “Deaf people should not be able to move without my permission!”
I think that speaks volumes about many of special education administrators and even many of those in the medical field. We are still very much considered as property and something to be fixed, because we simply just do not know what’s the best for us, so it is up to *them* to dictate what is best for us.
And I think that is central to the struggle here, and that is one main source of the Deaf Community’s anger. By no means am I condoning the militancy. But I do understand why it’s happening, and I think it’s time that hearing people recognize that they have contributed to this problem.
Once that is recognized, then I think we can begin the healing process and remove the need for people to feel that they have to go to such extremes to be treated as equal citizens, not as second-class citizens.
January 15th, 2008 at 10:16 pm
My daughter was already implanted with a CI when we got her. She was 5 years old and was “clicking” as her language – her foster parent at that time faught for her to get a CI so that she could have language. She had 5 years that she had to catch up on.
I pray that my daughter will not hear or see this harsh critism from the deaf community on a choice that was not hers! Where we live no one has ever said anything to me about her being implanted. She attends a deaf school where a lot of the other children are also implanted. They use SEE2 in her school and they also use SEE2 in our church. SEE2 has been a great resource to help Rebecca catch up on her language skills that she is so far behind on. I do not view it as an inferior language, but a tool to help her write.
As a mother of an implanted child I want to let you know that I absolutely plan on her learning ASL – I realize that ASL has to be a part of her life. We will all be attending an ASL camp this summer as a family. Most of the parents that I know of implanted children feel the same way. They are not denying “deafness” or deaf culture – they are just trying to make the best decision that they can & until you have stood in their shoes I don’t think that you should judge them. What would you have done with a 5 year old foster child who has no language and is clicking at you to get your attention? What would you do if your child continues to have tantrums because you cannot understand your child or your child cannot tell you how they are feeling?
All I’m saying is do not judge these parents and please absolutely do not judge these children.
January 15th, 2008 at 10:21 pm
Michele,
Did you read “Reasons For Toddler’s C.I in 1989?” My daughter Rachel is almost 21. Don’t you consider that an adult? I think that qualifies me as an “older hearing parent.” I am talking about my experiences, and Mishka will be posting what Rachel herself has to say as well.
January 15th, 2008 at 10:55 pm
Hi,
Melissa,
Sure that’s great!! I read your story about raising your daughter. I guess i was trying to ask for hearing parents who raised their deaf children in 1960’s to 1970’s as im from that generation.
But thanks for opening your story to us, smiles! Maybe other parents will soon follow your lead.
January 15th, 2008 at 11:07 pm
DebAnn– Thank you SO MUCH from the bottom of my heart for the kind words!! You are wonderful to be so caring for late-deafened people and other hearing people who struggle with issues they don’t understand.
I am taking ASL at college. I feel like I’ll never get it right. REALLY! I feel so stupid. I know the vocabulary, but it’s very slow going. I need to practice more. I have been watching vlogs and it helps when people transcribe them. Transcribing is almost better than captioning because when there are captions, they distract me from the signs. ((HUGS))
January 15th, 2008 at 11:09 pm
Perhaps what we should back off on is the refrain “it worked for me, therefore it is right and will work for others if only they accept it.”
Such closed-mind thinking divides us.
People are suspicious of each other, fearing they are going to be pressured to convert to the other’s philosophy.
Deaf people are distrusting hearing and hard of hearing people, wondering if they are going to be robbed of their say in what happens to them.
Hard of hearing and oral people distrust Deaf people, fearing they will be rejected for “being too hearing.”
It might work better to promote everyone, of all hearing and sign varieties, as worthy and that the differences are less important than the inherent quality of the person.
A Martha’s Vineyard community where one’s hearing status is just another feature of one’s individuality would be a great goal to work toward.
January 15th, 2008 at 11:44 pm
Michele– I have a story about a late-deaf friend and her mother that might be sort of enlightening. I don’t know. . . It’s not about Deafness, but HH-ness and ignorance.
First, I’ll say that I used to be angry about my own parents denial of my deafness and the fact my hearing loss was never diagnosed until I was an adult. It was only mild to moderate when I was a kid. I’ve had a progressive loss so it’s profound in the speech frequencies now, but I still hear low tones pretty well. There were signs I had trouble hearing, but no one ever thought to test it and my school district didnt’ do routine screenings. I was a natural lip-reader.
One time I was visiting a friend who was late-deafened. She ALSO had a mild/moderate hearing loss as a child that went unaided. We’re both the same age– fifty– so were little girls in the 60s.
My friend’s mother came over to show us her new hearing aids that afternoon. She was excited because she could hear again! They were those teeny little invisable in-the-ear aids you wear if you barely have a hearing loss. So after “mom” went on and on about her aids, my friend suddenly asked, “Mom? How come I never got hearing aids as a kid? You KNEW I couldn’t hear.”
“OH,” her mom said, “I took you to an audiologist and HE said it be better not to give you hearing aids. Why burden a pretty little girl with hearing aids?” he said.
And that was that.
My friend and I looked at each other and I almost felt like throwing up.
I wanted to ask, “If she had been crippled, would you have put that pretty little girl in a wheel chair or would you have made her crawl around the floor?” But I kept my mouth shut. Later my friend and I talked about it. She was upset. We both were, and it took some time for us to calm down. But I realized that day what a different time it was for our parents.
Michele– Our parents trusted doctors. Usually they didn’t question a specialist. Most specialists were men and women “knew their place.” Fathers left it all up to the doctor. Our parents didn’t have the internet or any of the resources we have today. It was a different time.
The specialists were wrong and parents trusted them. Our parents usually did the best they could with what they knew. I know my parents loved me the best they could. My childhood wasn’t perfect, but I’ve learned to overlook the bad and try to remember they had good intentions even though they sometimes made mistakes. That’s all anyone can ask. I have made mistakes raising my kids as well.
I know I will never understand the pain many Deaf children endured because of AGBell.
January 15th, 2008 at 11:49 pm
I don’t think that the Deaf community would disappear in the future but probably shrink a little and evolve if more and more deaf people receive CI and they’d be able to speak and hear better while using ASL. CI gives a bridge between the hearing and deaf communities. It’d be nice for deaf people to participate in both communities independently without relying on interpreters since the majority of them are born to hearing parents. I don’t blame hearing parents for not wanting their deaf children to be left out in their own community or losing them into the Deaf world. I grew up in a hearing family and often felt left out till I went to college and became part of the Deaf community. I would want to get a CI in order to be able to fit in the hearing community that I was born into and would also learn ASL to become part of the Deaf community. I embrace ASL and Deaf community but the reality is that almost all the world is hearing. My neighbors, colleagues, doctors, families, and classmates all are hearing and don’t know ASL. I’d have to use interpreters to interact with them and sometimes I wish I could speak directly to them without interpreters. CI is much more advanced than hearing aids and it enables a lot of profoundly deaf children to hear nearly normal with appropriate training. So, it probably changes everything for deaf children unlike hearing aids in the past.
January 16th, 2008 at 1:53 am
Mishka,
You really need to lose that word “fix,” my kid isn’t a car, he’s an eleven year old with feelings who is living a rich life. People need to evolve…it is all about listening – hearing or deaf…listening, sharing and growing together for the benefit not only of the deaf community but the hearing community as well. Does Rachel appear to need to belong to the DEAF community? After what Melissa went through, why would she EVER re-open a dialogue with the Deaf Community? Because she was never trying to “fix” her daughter, she just wanted to give her every possibility to develop as many identities as possible, including a hearing identity. Jodi (I’m really enjoying reading your blog.)
January 16th, 2008 at 2:57 am
hi all again- there are plenty i want to say, and to point out at some of above comments but it’ll only make us go in circles. so, i’ll not go there. instead, i’ll mention a few examples of positive aspects of the deaf community.
- “a place of our own” – on the contrary to typical belief, the “members” of deaf community actually live in the hearing world; we deal with many various hearing people daily; we adapt in the best way we can. naturally, we want a place of “our own” where we can gather and feel “at home” without any barriers in communication! Not only that, we come together for supportive system, sharing our talents and skills for whatever purposes. thus, a long time ago when deaf people gathered frequently, a culture was born… and it continues to pass on over years, and still today!
those deaf people with good level of hearing or got CI and grew up orally managed to live, as some called it, “in the mainstream.” many of them didn’t feel the need to go to a deaf club. many of them didn’t feel the need to learn sign language. that was their choice. however, many of them did go to deaf clubs out of curiosity; not everyone felt they fit in but many of them said that they “found” a home! again, not always true for all though.
So, that also can be in response to Paula’s comment: “Show us why our kids should want to be part of the deaf community. What are the benefits?” I believe that MZ has already pointed out on that in her blog: “rich language, heritage, traditions, and folklore, and so forth.” yes, that is general because all experiences are different. a person has to want to go there and see for themselves; then decide if they want to continue attending and how often, etc.
- “language!” it is already obvious! people have discussed, so i will not repeat. VLOG posts generally have much higher views than BLOG posts, of course with some exceptions of certain popular bloggers or certain posts consisting controversial titles. sign languages, such as ASL here and sign languages in other countries, have their own vocabulary and grammatical rules that are completely separate from spoken languages. Another valuable tool used in sign languages is: CLASSIFIERS that do not even exist in spoken languages – impossible! SEE, SEE2, etc are not sign language – they are manual coded systems for a certain spoken language, e.g. English.
- “literary traditions!” storytelling, jokes, poetry and creative use with signs or sign plays and other forms are very popular in our culture.
- “making connections” – like many have acknowleged that deaf community is very small, sometimes it looks like we are much bigger than that because we live in all over the country and the world. when there is a festival, a conference or a big gathering, many people from all over came together, meeting “old faces” and making friends with “new faces.” because of that, i have friends from all over in U.S. and typically have a place to stay when visiting certain cities/states.
- “shared information” – that is part of our culture; we like to share information, news, etc to keep each other informed. yes, we read newspapers, watch news with cc and so forth but sometimes, even silly small details shared from inside can turn out to be beneficial. because we are a small community, the news can travel quite fast from coast to coast! we don’t need deafread for that!
- “unity” – oh yes, it is true! there is still a STRONG unity within the deaf community! Negative comments on the DeafRead almost got me discouraged by the lack of unity until i talked with many people. then i realized that those negative comments, usually by small number of same people, gave a wrong overall picture of our unity; thus, misleading us into thinking we have lost the unity. not true. looking back in the history, the first DPN actually started out with a small number of people but as they consistently got together during rallies, the crowd grew larger and larger. When the protest occurred, the crowd became incredibly large! So, the unity is always there and don’t estimate that!
OK, I have given out more than a few examples. Now, why haven’t we seen that on the DeafRead? you may ask. First, the DeafRead DOES NOT replace Deaf Culture! It takes place usually “face-to-face” settings only. also, i have learned from talking with many people that there are actually not very many deaf people visiting DeafRead, and i can understand that. most of them prefer face-to-face interactions. Don’t get me wrong; I think that DeafRead is an excellent place for us to “meet” and exchange information, ideas, opinions, etc – making more connections with other people like myself, but also with other people from different backgrounds.
in closing, if you feel that you do not fit in the deaf community, that’s fine. some prefers to live exclusively in the hearing world; some prefers both worlds. I just ask people to refrain from making non-constructive criticisms on the whole deaf community based on bad experiences with a few or several or even many deaf people you encountered. i have plenty of bad encounters with certain bad-ass deaf individuals, but it’s a poor excuse for putting all blame on the deaf community!
yes, deaf people are angry and reserved – we are entitled to that! However, i agree that there are better ways of channeling our anger into something more productive. i have already seen many deaf people doing that, e.g. DBC (again, it’s brand new organization set up from a scratch with little or no money to begin with! give time, give support!), deaf and asl vloggers, etc etc. yes, some deaf people vented out and that sure got off on the wrong foot with hearing parents. that’s not really their fault. so, instead of sitting around and criticizing, why not we as a new DeafRead community reach out to each other and support each other in finding better ways of channeling those years and years of repressed anger?
Just like what Kim has been asking for better outreach to late-deafened people and others. Good idea, and why not go both ways? Why is it always expected that we, deaf community, always reaching out to all people. Why not late-deafened people and CI users connect with us, making us better in that area; it is not necessary that we have to completely relate with each other.
clearly, it’s now late and i am tired, so pardon me for the lengthy and incoherency (if any, ha) but the bottom line: you, the people, can offer more constructive thoughts and ideas and at the same time be part of solutions. For example, instead of telling the deaf community to raise fund, they can tell the deaf community different ways they can raise fund BIG and FAST, and take actions.
January 16th, 2008 at 6:13 am
Jodi, I understand your feeling about “fix”… it is a misleading word which could put some people on defensive stand and other people on offensive stand, not fair.
Words carry a lot of weight, making people to interpret differently or equally. But you are very right…. Deaf community is EVOLVING and I think that many “Deaf” people feel threatened by this fact.
January 16th, 2008 at 7:47 am
Karen…I totally agree…Jodi
January 16th, 2008 at 8:52 am
I wanted to clarify that we parents of deaf kids who implanted our kids had no aims at “fixing” the deaf community. We simply wanted our own child to be able to access the language of their entire family, easily.
The Deaf Culture can and will remain while there are people interested and involved in it. Our kids, however, cannot be saddled with a responsibility to maintain and utilize a social group which they have little in common with. It’s not their fault, and it’s not ours. It’s simply a changing world. Reaching out to grab those who you think “ought” to be in the Deaf Culture will not be attractive.
January 16th, 2008 at 9:37 am
Is there a difference between native language and natural language? I think English is native while ASL is natural. Please feel free to correct me (the experts only).
Disclaimer: I am not a linguist.
January 16th, 2008 at 10:09 am
WAD-
i am not an expert, but i know well enough to be able to answer, if you don’t mind.
“native” language is when someone learns a language FIRST and continues to use it. It doesn’t matter which ASL or any sign languages or spoken languages. For some people, their native language is English, some people, their native language is ASL. For example, for CODAS their native language tends to be ASL (here in U.S.).
“Natural” – well, it depends on interpretations. what feels that is “natural.” for example, for deaf children, sign languages would obviously be natural because it’s visual. Learning to speak English would be a struggle for most, because it’s not natural to them since they can’t hear the sound of the words. That’s why deaf children with CI and hearing aids still have to spend a lot of time practicing with listening, speaking, etc.
January 16th, 2008 at 10:21 am
Susanna, i suggest to refrain giving out misleading information: “Reaching out to grab those who you think “ought” to be in the Deaf Culture will not be attractive.” – We, deaf community, are not a recruiting group. This statement sounds like if the deaf people eventually came to be part of the deaf community, it’s because we “stole” them. Not correct.
January 16th, 2008 at 10:35 am
Susanna, I agree. It’s not the children’s burden to take. But I am continuing to see zero acknowledgments of misdoings that go on to this day. That is why many of us in the Deaf Community are angry, and don’t want to cooperate on overcoming this problem.
It is only now that I am finally seeing the medical establishment *finally* admit that CIs are not the miracle cure for deafness. The cynical in our community will say that’s happening because it’s only now that we finally have evidence that there are CI failures.
It is deeply ironic to me that people do not understand the militant Deaf is doing EXACTLY what happened to them. All of their lives, and for many of us as well, we were shunned, to be pitied upon, and told that we’re missing out on something.
Not all of us have the capacity to deal with this in a healthy way. So you are seeing the end result of that. Now some of us are turning around and telling the hearing parents and the deaf children with CIs, that the child is missing out on ASL and the Deaf Community.
For the militants, it’s about giving the hearing a taste of their own medicine.
I for one, do not support that and please know that there are many of us in the Deaf Community also do not support that. I think that is wrong, and NOT anyone’s place to tell anyone else what they’re missing out on. But I do think it’s important that hearing parents understand and acknowledge this.
Because once that happens, you can help us put a stop to this behavior. We then can start to work together and tell the public, the doctors and other parents, “Hey. CIs and ASL can co-exist and quite peacefully at that. They do not cancel out each other.”
But before that happens, there has to be acknowledgment and some kind of amends made.
January 16th, 2008 at 11:13 am
I think my point is that our kids, and even us parents, are not responsible for whatever happened to deaf militants in their past. We are not advocating harsh activities, and their experience is not similar to our children’s current lives.
I’m sure CIs and ASL can peacefully coexist. In addition, ASL and speaking deaf could peacefully coexist.
brenster, one only needs to read the deaf blogs on deafread to see that there is a group that seems desperate to “grab” these kids. They insist that we have to utilize sign language. It is not my kids native OR natural language because they hear just fine with their CIs. It is clear. My son listened to a CD about Arachne and King Midas this morning as part of Greek history lessons. At the end, I made no comments but simply asked the discussion questions. He answered them just fine. One more example of the normalcy of our lives. We happen to have kids with cochlear implants, but we don’t have anyone in our family who struggles to hear on a regular basis. Even in noise, my son hears almost 90%. And yet, there are these people who insist that they need to go around telling us what to do, even though our experience is very different from theirs.
Again, we aren’t causing this rift, we are simply living our lives. It has very little to do with what happened decades ago. That is not our children’s story.
Deaf pundit, who should the acknowledgement and amends come from? Me? My kids?
January 16th, 2008 at 11:30 am
Susanna, thanks for your confirmation “that seems desperate to “grab” these kids” because when you said “seems,” it does not make it a fact. i do not know if we are talking about the same organization, and i do NOT see any on the DeafRead where a group “seems” to be out “recruiting” deaf kids. from what i understand about the group (again, i do not know if we are talking about the same group), it just wants to spread out awareness about the benefits of sign languages. Ultimately, of course, it’s up to the parents if they want to include sign language or not.
it needs to be noted that it didn’t only happened decades ago but it is continuing to happen today.
if you feel your kid with CI is doing just fine, that’s fine. if your son grew up and wanted to learn sign language or whatever, he will be welcome. if he grew up and never became interested in learning, that’s fine, too.
January 16th, 2008 at 11:32 am
Maybe I will add an acknowledgement, despite the fact that no amends can really be made. I acknowledge that I would have hated to leave my child at a residential school. I would have missed him terribly, and his tears would have ripped my heart out.
I would have hated to do anything punitive to my child for using his hands to speak if he could not hear at all.
I would have hated anything which would have held him back, wether it was TV without captions, phones without TTY, rude schoolmates, harsh teachers, misinformed bosses, etc.
I’m sure the list can go on. I am not experienced with it. I am very, very glad that my son is not experienced in this, and I do hope that he will not have to.
I do know that the other day I called to arrange babysitting for one of my deaf sons at a health club which I newly joined. I felt my hackles being raised when they asked if he was walking (he is not due to vestibular issues that are somehow connected with his deafness; his older brother was the same way) and I had to say that he is of normal walking age but can’t walk due to a disability. I hated using that word but was afraid I might have to cite the ADA if they gave me any trouble. They only allow a 1:1 ration of caregivers for non-walking infants, and 1:7 for walking toddlers and older kids, and were about to turn me down.
That’s not a great example but I was totally prepared to cite the ADA and insist that, legally, they did not want to “go there.” It’s the only example that I can think of right now. They didn’t bat an eye about the CIs, fortunately.
I’m only saying this to reiterate that 1)we parents are not the cause of the previous grief and 2) we can’t go back in time and remove it. We wish deaf adults only the best.
January 16th, 2008 at 12:40 pm
Wow.. a lot of comments here
Kim, please feel free to contact me about learning ASL. It’s a wonderful language and I’m so glad when I learned it at college
Jodi, ‘fixing’ is not my word, but how many deaf people felt when they were growing up.. They were perceived to be defective and drs trying to repair them… Many deaf adults are happy with what they are and don’t want to be ‘fixed’ at all. Of all disability groups, some of the deaf and little people don’t consider themselves disabled. They don’t feel handicapped. I know parents only want the best for their kids
Susanna, usually deaf people seek out Deaf Community as they feel the need to be with people they can identify with, whether it is the language, or a feeling of kindred.
What seems to be ‘a desperate grab for kids’ is actually education for oral educators, doctors, audiologists and hearing parents because for some kids c.i. isn’t enough to provide language acquisition. We are still seeing many c.i. kids going to deaf schools with minimal language skills. Hence their concern and interest in educating the parents as it is hard to predict which kids will be successful with c.i.s and which ones will need a visual language. Your kids are doing exceptionally well and I’m glad for you and them, too. But we know other kids who don’t do well, for a variety of reasons. Parents need to hear about these cases, too, so they can better meet their kids’ needs.
January 16th, 2008 at 1:07 pm
Susanna, absolutely. You and other parents are not responsible for our grief and pain, and the only thing we can truly do is move forward.
But you can help us move forward by doing what you are doing, and also correct people’s misconceptions that what works for your child, does not mean it will work for ALL other children. That does need to be said, over and over.
That, personally for me, is making amends. Helping to make sure what happened in the past, will not happen again.
None of us want to see the cycle of anger, emotional and mental instability, our rights being violated, ‘one size fits all’ mentality and the CI/oral and ASL war continue. It’s gone on long enough.
You and other parents, whether you like it or not, are part of this cycle, because your children are deaf. I’m asking you to please help break this vicious cycle by getting the word out there that one size does not fit all, and ASL is something that should be respected, just like CIs are.
MishkaZena and I and others are trying our best to break this cycle, by presenting information from ALL sides, but we cannot do this alone. It only takes a few minutes of your time – such in random conversations and such. Jodi’s already doing her part by blogging, for instance. It doesn’t take very much on your and other parents’ part, but believe me, it will go a LONG way.
January 16th, 2008 at 1:49 pm
Mishka,
I am deaf and I feel I do have a disability. Call me what ever you wish but please speak for yourself.
January 16th, 2008 at 3:08 pm
John, I understand some of where you are coming from because for our family, for our kids to be deaf in a family which already had entirely hearing people, it was a disability. In addition, it sure feels like a disability to think of your kids having difficulty communicating at businesses, stores, schools and more.
This is one of the reasons we chose to implant. Contrary to what is often stated, cochlear implants are nearly always successful IF appropriate therapy is undertaken, if it’s gotten young enough, and if people trust it to work. If a kids only wears it a few hours a day or only while at school (true stories from some deaf schools nearby) then of course it won’t work. If the child already has another disability, then the results will be different than for a child with otherwise ordinary cognition, etc. It is extremely rare for cochlear implants to just “not work” for no reason. This is one area which I think has not been fully understood by deaf adults. We are not risking life and limb doing this surgery; no one has died as a result of the surgery. It is also clear very quickly if the device is functioning– usually within 3-4 months if not sooner. Once it is functioning, tweaking the map will allow for better and better hearing, so that most children implanted before preschool age will function very similarly to a hearing individual when out in the mainstream (not just educationally, but everywhere).
Deaf pundit, I have been getting the word out for nearly a decade now, and thankfully have seen lots of positive benefit for kids with CIs. I work in that area because that is what I know. Of course we know that not every single deaf child will likely benefit from a CI, but the reality is that the vast majority could. I will not shy away from that even while I do allow for and respect those using ASL (of all ages). Mine is a “live and let live” philosophy, while at the same time educating parents who come wanting to know how it is that our kids do what they do.
January 16th, 2008 at 5:10 pm
I think there’s two different perceptions here, and both sides are saying each side are wrong, when in fact, both sides are right AND wrong.
The Deaf Community has and continues to see a lot of CI failures. We do not see the CI successes, because they don’t have to nor want to do anything with the community. But the successful CI’ers are out there, and in far more numbers than we in the community would like to admit.
On the other side, the hearing parents see the CI successes because they’re then able to assimilate into the larger culture, but not the failures, because then they’re carted off to the Deaf Community and hidden from view thereon.
I’m glad that the CI has worked wonderfully for your children, but I have yet to see a critical mass of parents explicitly say, ‘Those are the options. This worked for my child. I can tell you in detail about what worked for my child, and here are names of people who know more about the other options. You should get all of the information possible, so you can make the best decision for your child.’
But the sentiment I’m getting here is, that’s too much to ask for.
January 16th, 2008 at 7:39 pm
Oh, they’re out there (a critical mass of them). I am on a discussion group with over 1400 of them. Not only does all the information get discussed, but the book “Choices in Communication” comes up frequently when new parents want to see their options. It really does get discussed… there are a variety of parental choices. You don’t see and hear it on deafread, of course.
When parents get involved with birth to three programs, it is not uncommon for ASL to be stressed rather than oral methodologies, actually. I was given lots of info on all methods in the state we were in, and there was probably a lack of oral information, because I had to go looking for it. No matter what methodology is discussed on my email discussion group, there are dozens who have input on it. Really.
One person commented that AG Bell had done a great disservice while telling a story about a child whose parents didn’t get them hearing aids. What?! That has nothing whatsoever to do with A G Bell. Not only would that organization not said that a pretty little girl should not have hearing aids, but they would have supported whatever means one had available at the time to access sound. I can not believe the multitude of comments attributed to the organization or the man which have absolutely nothing to do with them. Did you know about Dr. Bell’s glove, or his signing to communicate with various young children? Do you know about the fact that he disliked institutions or residential schools and thought that children had a right to be included in their families? How’s that for cruelty? Don’t blame all hardships on Dr. Bell or the Association which bears his name. It was not involved in the residential programs of the 20th century. It was not involved in SEE, it was not involved in SEE2, or TC, or simcom. One thing for sure is that whoever told the parents to not get hearing aids because it was a “pretty little girl” was not involved with the A. G. Bell Association, and probably had very little understanding of any of the methodologies or recommendations surrounding them.
W
January 17th, 2008 at 5:58 am
Susanna… keep visiting us, since we have a lot to learn from you. We do need to separate facts from myths, make peace with the past, and move on… FOR children’s sake… ASL or not.
January 19th, 2008 at 11:09 pm
Having been totally Deaf for nearly 37 of my 47 years, I’ve experienced a lot more than the run-of-the-mill late deafened adult.
My history goes all the way back to fifth grade, when my parents decided that, since I’d been a straight A student, in fourth grade, they would leave me in public school, even though I’d lost my hearing.
The result of that decision was disastrous, so I began sixth grade at the Georgia School for the Deaf, where I soon learned not only that English is not the Deaf language but also that I was learning ASL as a second language.
By the time I’d completed two years, at GSD, I was moved back to mainstream, mainly because my parents had decided I’d outgrown the need for a residential school – how they came to that conclusion is beyond me though.
Well, after I graduated, from public school, I was no more ready for college than I’d been after completing seventh grade at GSD.
What I’m saying is taht ASL is the Deaf language and my having been hearing, first, didn’t change that. Mainstreaming destroyed what could have been a career as an educator because it scared me from continuing school.
Hearing teachers have, since, told me I should never have been mainstreamed but the past is over. I hope it doesn’t happen to another late deafened kid.
January 19th, 2008 at 11:11 pm
Also, during my mainstreaming years, they acted like all we needed to do was lipread.
This is impossible, even for the better lipreaders (I know because I was one of them.)
Two proofs of this: First, lipreading is made easier if the person is speaking to and knows they’re speaking to a Deaf person. A hearing teacher in a hearing enviornment isn’t doing that.
Second, if the teachers is writing on the blackboard, it’s impossible to see his/her lips and if he/she is reading….forget trying to because they always read fast
January 21st, 2008 at 10:29 am
I just want to drop a bit of statistics here. I was reading the January 20, 2008 issue of Gold edition of DeafDigest (available at http://www.deafdigest.com/Gold/index.html) and saw the statistics in Sweden. I remembered your mention of 40% and thought that the statistics in Sweden should be mentioned here, just to give an idea of how prevalent the cochlear implant is among the deaf babies.
Here is what it said:
– 90-95 percent of deaf babies get CI
– 50 percent of these implanted babies learn sign language
Keep in mind that this is for Sweden only. Sweden, for those who are not aware, is really a small country. In respect to area, it is between California and Texas. In respect to population, it is between Georgia and North Carolina.
Joseph Pietro Riolo
josephpietrojeungriolo@gmail.com