Moot Thoughts & Musings

I can understand somewhat. Deaf of Deaf, with many generations of deafness, feel it is not a disability but a cultural aspect. They cannot understand why others don't see it their way. Yet I also understand why hearing people have the need to fix the deafness of their kids that they perceive as a disability. It is really a clash of two different cultures. I don't know if that makes any sense to you or not.

Aww, well I think a lot of times people are tacitly judgmental about all sorts of things, maybe without realizing it. Like, a trivial example:

Person: What are you listening to?
me: Opera.
Person: I hate opera.
me: *wonders silently* And you're telling me this why?

People can be very opinionated, and people often tend to blurt out their opinions by way of conversation, even when it's rather tactless and unhelpful. (There was a guy at work who smoked pot but used to rail against all forms of medicine, berating anyone who dared take an aspirin in his presence or offer him a cough drop for his constant cough. But who cares about his opinion?)

And I'm sure you know how militantly opinionated some women can be about breast feeding. Everyone thinks they're the expert and they know what's best for you/your child/your family. It's just people being people. Annoying, but a bit inevitable. And everyone has to endure it for one thing or another.

Aaack! Listen to me rambling, as if I thought I was an expert! I'll shut up now. :P

It s good that you continue to expose ASL to Ellis and don't let those deaf people bother you if they don't like CI. We are Deaf parents and have a 2 yrs old with CI. We'd like her to be bilingual in ASL and spoken English, too because we are also from large hearing families and her father and I work in the hearing world. We also have another child who is hearing.
I think I understand why a lot of Deaf people oppose CI and I think because they are not familiar with it like Bob Davalia said about hearing aids when they started to come out and most Deaf people resisted them but now most of them use the aids! I agree with Bob that the same thing is probably happening with the CI. I used to oppose it because I was ignorant about it and I only knew CI myths until my deaf child was born and I had to research options for her. Hearing aids didn't benefit her enough and we decided to give her a CI. She could hear well with it nearly like her hearing peers and has been progressing very well. CI would help make it easier for her to communicate in the hearing community but I'd expect her to remain part of the Deaf community as CI doesn't change who she is!

When I found out my daughter was deaf, I was thrown into learning a lot in a short time. Searching out deaf people, listening, and absorbing every bit of what they would tell me, made all the difference in the world. They are the experts. They have endured oral programs, suffered communication isolation in mainstreamed programs, and the fortunate who were the most lucky were allowed to thrive socially, emotionally, and academically in Deaf Schools that allowed them to embrace ASL.
Deaf people know what is best for our children. Believe me please. I am not being biased but being honest with you. You have chosen a CI for your child to hear better. Deaf people are proud of being deaf and proud of who they are. Too many parents are implanting with the idea of fixing their children to become hearing. You are an exception because you also realize that your child is visual and needs ASL as a first language (I hope I am right in this assumption.) You will have to learn to accept how many deaf and hearing people feel about this. Hearing is only a small part of the big picture.
Allow your child to be a child. Allow your child to have deaf peers and role models and lead a normal life. All this is possible through ASL and keeping your child connected to the caring Deaf Community that is right there in front. Your child must feel comfortable with his own identity to thrive.
Work harder than you have ever worked to learn ASL. Learn as much as you can about Deaf Culture. Communicate in your child's language and throw yourself into his world. This will forever keep him in your world too. Your child will thank you over and over. I promise you that:)) Contact me anytime as I would love to know you better.

Mish, yea, I can understand those thoughts. I guess I kind of see them as the defining poles of the CI debate.
What I don't get is how Deaf of Deaf, as you say, can blithely use hearing aids and then oppose CIs. I have more respect for those who are against all assisstive devices, because it's, well, more consistent. Know what I mean?

Hearing Mom, if you've read this blog for awhile then you know what you say is true of us.

J'net,
I love hearing about E's preschool. I can't imagine how hard it must be to drop him off! But once again, your love for him shows, as you are concerned with giving him the best learning environment possible. I think that's awesome.
From someone who knows you, you are a fantastic mother - deafness or not. And most of all, we know that there's an added element to this. You're not working alone. This has all worked out in God's providence, and how little E communicates isn't the "end". We can't wait to see what a wonderful young man he will eventually become with the sweet parenting from you and Chris.

I am glad you are able to express yourself here how you feel around us and C.I. It is important that we share this together in order to understand our views and depth of various issues. I applaud for your bravery to express, and I also am glad you did not close the comments, grinning.

I have known someone close. This person went ahead to have C.I. in late age, because hearing aids did not help anymore. This person was able to hear once again; those birds singing, sons and daughters voices. This person made self acclaimed unchanged deaf person.

Firstly, congrats to E as it sounds like he is doing AMAZINGLY well just 2 months post activation! I'm seriously blown away by that.

I am beyond thrilled to have found your family. I couldn't agree more with your sentiments in this post, I'm equally confused by the hearing aid/Ci acceptance. It's like people who wear contact lenses judging those who wear glasses - it's senseless.

It sounds like E has plenty of exposure to deaf children and adults and native ASL...all things that are out of our reach in our tiny geographically isolated neck of the woods. There is NO deaf community where I live. No other deaf children, no adults to talk to. So I'm very envious and happy for you all for your situation.

Hey there...I wouldn't take that Deaf woman's comment personally. It seemed that she was asking you a direct question. The blunt factor is actually part of the Deaf culture...something that may take some time to get used to. You won't believe how many blunt questions I've seen Deaf people ask others that make me want to hide in a hole! "WOW, LONG TIME NO SEE! YOU FAT, WOW!" *gulp* In the hearing culture, of course that's rude and offensive but many Deaf people don't have that filter. ;) In the meantime, you can prepare a statement to respond back to any questions about E's CI. It's important to rub the fact that you continue to expose E to ASL in people's faces. Heh.

I'm glad that Ellis is starting to adjust, and make fun friends! Brave boy and brave mama!!

J'net, you are doing great and so is Ellis. He oozes confidence. He will do just fine and I am glad you get a few hours a week to hear yourself think. It's priceless and I am sure he is well taken care of in the meantime, or you wouldn't leave him there.
Love, Your Mom

Keri, I actually thought of that aspect of Deaf culture later. The bluntness. I've heard of it. And I had younger Deaf people (like my age) tell me that they just aren't like that. I've never experienced it, but it makes sense in this context. Just very straightforward. Ha! Whatever. I'm hormonal, guess I shouldn't take things so personally. :-P

J. I appreciate your talking through everything on your blog. You think through it all so thoroughly. I've given your address to one of Will's friends from high school who is taking ASL (this is her third college course) and is really interested in this line of work. She says she would love to have a deaf child. (She and her husband have been married a year and a half.)
I think all of us desire to be part of a group. We as Christians have our church identity, and our relationship to that body and the wider Christian body. But I think people outside that group have their own, such as "deaf identity". I don't think Ellis needs to get bogged down in that. I thought a comment ages ago from MaryKathryn (know who I mean) about his being part of your Christian body and that you're doing what's best for HIM, and you're not responsible to another group.
Hang in there, girl!

Hi Jeannette,

I recently found out that almost all CIs work. I was amazed to see that compared to using an aid CI's are top dogs. They equal to almost normal hearing - around the 20 db range from low to high freq's. And with follow-ups/training, the CI user would be able to understand how to use that hearing. The blunt deaf woman probably didn't know the difference between an aid and CI.

It will take awhile before you develop a tough skin for these kinds of comments. I brought up the issue of "alienation" in my "Spoken Language and Audiology for Teachers of the DHH" class at CSUN. I wonder where the middle road is. How can we welcome parents of deaf children in the deaf community if we constantly alienate them with our comments like these?

I'm truly amazed at your perseverance. I've also told my class about your website.

Hi Jeanette,

I am glad E is adjusting nicely with his CI.. I have a CI myself.. I have been activated for about 18 months. I have gotten some sneer comments about my decision of getting a CI. I just say ok whatever.. Yes it hurts my feelings when people have such a negative perspective on my decision to make my life a bit easier. Its hard enough being deaf and having the barriers infront of me and the constant frustration of dealing with ignorant people.

The reason why I decided to go for the CI is so I can hear my husband's and my 2 son's voices. Also to be at ease with my frustrations of having to deal with hearing people that know nothing about the deaf culture and ASL.

Meanwhile just ingore those sneer comments and hold your head up high. You did the right thing for E. You gave and still are giving him all the tools to make his life easier as a deaf person.

Enjoy E to the fullest!

The difference of reaction toward C.I. and hearing aid are due to the fact that C.I. is considered invasive, requiring surgery which always is risky. Complications from surgery do result occasionally, like partial facial paralysis and vertigo. Complications from C.I. may include headaches and tinnitus. Unfortunately there were deaths by meningitis caused by the insertion of C.I. though that's now averted if the kid has been vaccinated against meningitis. Compared to a hearing aid, a C.I. is more drastic, eliciting stronger aversion by some deaf people.

Then there is the long history of deep deception practiced by oral educators who promised with extensive aural and verbal therapy, deaf kids will function like 'hearing' kids. This rarely happened and left many deaf kids with scars resulting from language deprivation and various abuses dished out by oral educators, and their parents feeling betrayed. So understandably, the deaf people are highly skeptical of these 'promising results' touted by oral educators. They don't want the future deaf kids suffer what they endured growing up.

Wow --I am amazed that someone hearing would say "I'd love to have a deaf child!" Sorry. It just gives me the creeps. Being deaf is not a novelty or a game. We love our deaf children, and accept them fully, but as a hearing person, would I have CHOSEN a deaf child over a hearing child? No. His life is filled with challenges that other children don't have. Communication will always be a consideration for him, as well as all as of our hearing family members. It gets exhausting sometimes. Do i love him just the way he is? Of course. But would I WISH for another deaf child?? No.

Nina, you see, in the Deaf Community, there is no problem with communication, especially if you have a deaf family, deaf grandparents, deaf uncles and aunts, deaf cousins, deaf friends, deaf schools. Everybody one associates with uses ASL. In the Deaf Culture, deafness is a desired trait. Not only do they want deaf kids, they often adopt deaf kids from overseas, and few evenhave deaf cats and dogs for pets. To them, deafness is NOT a handicap.

This is what I mean by different cultural values. In the hearing society, deafness is considered a disability. Not in the eyes of the Deaf people who have adapted remarkably well over the generation, having developed a vibrant language, culture, heritage, and arts and considers itself a linguistic minority.

Mishkazena,

I agree with your posting almost 100%. If the parent understands the risks of CI surgery, weighing the risks and benefits of CI as well as making sure that the child is comfortable, and not coerced in any way to develop speech and auditory training, then that's a personal choice, not a deaf community choice.

It's always the choice of the parents. We hope that they are fully informed of all the available options before they make a choice. However, it appears from my recent research that frequently parents are given limited and biased information. That's not the case with Jeannette. I can see she has done her homework thoroughly. Hopefully other parents will learn from her that ASL is not a dirty word.

Thanks for such a nice conversation, guys. Mish, your comments make sense. I can sort of understand better the difference between CI/aid. It was a lot harder of a decision to get a CI than a hearing aid, particularly because of the invasiveness. It's easy to say, 'yea, I'll try an aid for awhile." but a CI? yea, that's a bigger decision.

Actually, it's funny that this topic was even brought up, because whenever we have another kid, I can honestly say we hope that s/he is deaf, too. We've had this discussion several times. It would balance out our family nicely. And there's a lot of opportunities for deaf kids. Hey, it's a 25% chance. We can hope. :-)

Hello,
Thanks for leaving a comment on Isaac's blog. I haven't posted a lot lately to his site I guess from frustration. I feel like everyone that I know via the Internet is getting their child bi-laterals. I am not sure we want to do that with Isaac unless he wants to. He is Deaf and he still signs. We sign with him although very poorly. He is a smart boy and knows as many signs as we do. I feel like we are the only ones that sign with our implanted kid too. I feel like we need to give him exposure to Deaf Culture because it is who he is even though he can hear. I don't think that many people feel the same way. It was nice to hear that you sign with Ellis. Lucky for you that you are in an area where there are lots of other deaf people. In our area, there aren't many and even fewer children. Hopefully we can meet sometime. We always want to meet other CI friends.

I know this post is a little old and the conversation is dying off but I wanted to point out something very important. One of my biggest concerns about CIs is that insurance covers 100% of the costs. That leaves out people who don't qualify for CIs or who opt out of the surgery in the lurch because insurance companies do NOT cover hearing aids. There are SO many people who are hard-of-hearing and need hearing aids to communicate with hearing people. If CIs and hearing aids were both covered by insurance, then my feelings about CIs may shift a little.

Right now, audiologist jack up the prices of hearing aids up to $3,000 PER hearing aid claiming that most of the cost is labor. However, by law, they are not required to list the costs of every little thing so everyone gets one bill with one item on it: the hearing aid. If the list were itemized, we would all be able to see that audiologists buy hearing aids at the mere cost of $300! That's outrageous! Something needs to be done about that and it seems that legislative action is one way to confront the issue.

I totally understand your sentiments, Keri. I despise the medical system that excludes so many people from its benefits. For what its worth, though, our insurance doesn't cover CIs or Hearing Aids, and we have really, really good ins. Dental, vision, and all that. Medicaid covers all E's CI expenses and currently is paying for speech therapy, too. The hospital seemed to think it was pretty par for the course. In fact, applying for Medicaid is one of the first things they suggest parents do when they ascertain that the child is eligible for any assisstive devices.

I am puzzled by all the talk of "identity" for deaf children, and of how they "belong" to the deaf culture - that's "who they are." I find it terrifying that Jeannette and Chris can have a baby, a nice little boy, and simply because his ears don't work, a whole community of people have suddenly claimed him for their own. It's as if he doesn't belong to Jeannette and Chris anymore...sorry, guys, you have to abdicate your parental rights, and hand your baby over to us. He's "really one of us." It is thoroughly creepy to me.

As far as I know, only deafness produces this effect. Children who are born blind, or lacking limbs, aren't absorbed into separate communities like that. And from reading this blog, you can tell why - it's all about language. Language defines culture. The defensiveness of the deaf community seems to run like this: if deaf kids are allowed to hear, and don't learn our language, then our culture might dwindle! Oh no! We must retain as many deaf children as we can! That's just how it sometimes sounds.

Like Nina, I'm blown away with anyone wanting her child to be born without one of their senses. I understand that, for Jeannette and Chris, it would be good for Ellis to have a deaf sibling. But would I want to deprive a child of his hearing, for the sake of the other child? I DO understand that many here don't view deafness as ANY kind of a disability - especially those who are living in a deaf world - almost a deaf bubble. That is normative for you. But there's a big world out there, guys, full of people who hear. Why live in a bubble?

I know that my theology influences my thinking. I hope nobody minds if I express my view here - I think God made ears to hear. Because we live in a fallen world, some ears don't work. But I still believe that, as much as possible, we should fight against the fall - against its impact in our world. So, for me, this all boils down to a theological understanding. Is deafness good, or not? Is it of God, or not - or neutral? Perhaps that's one reason people feel as strongly as they do on the subject.

I'm sure to have just offended some people. I'm sorry. I'm only stating my opinion. I'm also trying hard to understand a whole world of people I was previously unaware of. Watching my deaf friends try to ride the middle line between 2 cultures has been hard for me. I admire their dedication.

Ah, Jeannette, thanks for the clarification on insurance for CIs. I'll do my research next time I want to open my mouth, err, my hands....for typing, that is. ;)

And Mary Kathryn...*sigh* This debate is SO old for me. I'll just sum it up in one sentence for you: "In order for one to truly understand what it's like to be deaf, you have to walk a mile in our shoes." It's NOT our deafness that produces the effect of segregation between the Deaf world and the hearing world. It's our SOCIETY. Because we are not "normal," we are shunned by those who consider themselves "normal."

On a personal note, I have absolutely NO friends who are hearing with NO affiliation with the Deaf community. All of my hearing friends are either interpreters, work with my husband (Deaf), have a deaf person in their family (i.e. Jeannette) or at least know or want to know a little sign to enhance our communication (I can speak and lipread to get by). These people are open-minded enough to make an effort to include me and get to know me and see me as a person beyond my being deaf. I have gone to countless yoga classes, playgroups, neighborhood parties and stuff like that to try to get involved with the general community, mostly for my son's sake since he's hearing. Recently, I stopped doing that because here I am making this tremendous effort and while people try their best to include me or say hello and ask me how I am, it is NOT the same as being with other people who are deaf like me.

By being with my deaf and hearing friends who are familiar with the Deaf community, we can get past the superficial stuff and we DO feel like we belong in that community. That's what makes the Deaf community so unique compared to other cultures of the world: one does not have to be born into the culture to belong. They, like me, can be born into the hearing culture and then later find their way into the Deaf culture and at last not feel alone. Unfortunately, no hearing aid, cochlear implant, speech therapy or all of that jazz will make a difference for a deaf person to feel like they COMPLETELY belong in the hearing world (my opinion/observation). It's our society that needs an attitude adjustment.

My ASL II students are currently reading "Anything But Silent" by Mark Drolsbaugh and they have learned SO much about the Deaf culture through the scenarios that Mark presents between deaf and hearing people. I recommend those who have no idea what the Deaf culture is like to read this book-a very easy read with super-short chapters. =)

OK, jumping in on this topic as a complete outsider who is from a totally hearing culture.

I had a daughter just 1 month after Ellis was born, and found the blog as I was prego and Ellis was starting breathing life. I have lurked and read and learned everything I know about deafness here--been exposed to a whole new piece of our world--as Ellis' parents have learned about their son's future life and opportunities.

I have a very close set of friends from college (5 yrs out) and scary as this has seemed to those marrying in, we have been able to "assimilate" each and every spouse as they've come along. One of those spouses is profoundly deaf.

It is hard to communicate with her, particularly as none of us is used to including a deaf person and group noise cancels out the hearing she does have. But I am amazed at her skill in following conversations, and it has been important to us to get to know her and make her feel welcome and a part of "us". None of our group signs, and I don't know that that will change much. We don't live close enough for it to be "important". But maybe that is insensitive and unloving on my part as a hearing person.

But I do know that I have been able to really get to know her over email (not phone so much :) and we can talk, and she speaks enough for us to listen when we are together. So I think it is possible for the hearing community to include a person who is deaf, just as I might get to know anyone else God threw in my path. There is always an affinity for people to bond with those with the same limitations/experiences as they have: mom groups, marrieds or singles/ spinal injury families with like, age groups, internationals/expatriates etc.

I don't particularly feel that I belong in the Deaf community at all. It just doesn't have to be so black and white when it becomes personal.

But maybe I haven't really grasped the thought or broad strokes in this discussion.
I continue to learn from all y'all.
rc

J - I just want to let you know that I think you are a fantastic mom!! I am not nearly educated enough to make any kind of statement about deaf culture & hearing culture. But, as a friend and fellow mom, I can say without question that you are doing an amazing job! Don't feel a bit guilty about those few moments alone in the coffee shop. - Time for yourself makes you a better wife and mom. :)

Keri -I'm sorry to bring up a conversation that is probably "old" for many here. It's new for me. I appreciate the explanations, even though many of you may feel you've given them 1000 times.

I disagree that the cultural separation between hearing & deaf worlds is all the fault of the hearing world - or "society," as you call it. From reading postings from deaf folks here, there seems to be plenty of strong desire to keep the deaf culture separate, and to keep the hearing culture at arms' length. That's what I'm getting, anyway. I admire those who are willing to do the hard work of being in both.

Ellis is the only deaf person I know, and I've never actually met him. It seems that deaf people here want the hearing to learn ASL, to reach out to the deaf, to work hard to include them in the overall culture. How can I do that when I don't even know any deaf people? WHY should I? It makes perfect sense for those who have deaf friends. I NEVER see people signing in public. Where is this deaf community that longs to be reached out to?

Also, your statement that the deaf culture is unique because hearing people can become part of it, seems inaccurate to me. Just because I'm not born into another culture, I can certainly become part of it - a foreign culture, for instance. Or joining a new denomination. Or even marrying someone of another race. It may take a few years, but one certainly can join other cultures.

From reading posts here, I actually hear the OPPOSITE about deaf culture: that once you are born into it, you can NEVER, EVER really belong to another culture. I find that terribly sad, and I hope it is false. Also, your comment that I can never understand deaf people, unless I've been deaf myself, also smacked of an exclusive attitude - that at a certain level, the inner circle of real deafness is a state untouchable by others. Frankly, I hate to think that deaf children are constantly being fed such concepts. How limiting!

MK,
Well, this is my perspective on it all. So we had a deaf kid; one of the first things we did was seek the perspective of Deaf adults, after all, they were the ones most suited to give us the perspective of what it means to live deaf in the world. The overwhelming majority of stories of deaf adults was that their parents, meaning well, either didn't sign or didn't teach them to sign or both, hoping to teach their kids to adapt to the majority hearing world. The usual result are feelings of loss and isolation on the part of the deaf kids, something with which they weren't equipped to deal as children, and by the time they were adults the damage was done. Imagine not being able to communicate with your family.
So when you say: "a whole community of people have suddenly claimed him for their own. It's as if he doesn't belong to Jeannette and Chris anymore...sorry, guys, you have to abdicate your parental rights, and hand your baby over to us." I think you're misunderstanding the point. The point is that deaf adults remember the horror and isolation of their childhood and are hoping to convey their experiences to the hearing parents of deaf children who can have no idea what that experience is.
And it's not driven the fear of cultural self-preservation. The fact is deaf babies are born all the time. The debate is how to give them the richest life's experience. Well, a deaf adult is probably best situated to answer that question, yet their voice is almost unilaterally excluded by the professionals who are advising the parents. Which is why there is an urgent, even militant, tone sometimes in the exchanges between deaf adults and hearing parents of deaf kids.
True, in our unfallen state, we were created hearing. But I believe God can use any aspect of the fallen world to bring Him glory. Ellis's deafness has been a source of grace and blessing in our lives. I hope Ellis's life will shine with his true identity in Christ, and I hope that God will equip Ellis mightily to use his deafness to bless others.
You never know who will come across your path, but I hope for all of us no matter what changes we have to make that we will always live in a posture of Grace to other people.

I'm in no way disagreeing with the wisdom of the choices you've made, nor with the importance of looking to the deaf community for input on Ellis's situation. That is just plain good sense. Neither do I disagree with you that God (and only God!!) has the power to redeem all the aspects of the fall, not only for his glory, but for our good. So yes - Ellis's deafness can be made a good thing, in a complex plethora of ways.
My points dealt more with the reaction of the deaf community that I've read on this blog. I understand that they are functioning with the effects of generations of ill-treatment. Their concern is for the child. But I do take issue with their fundamental distrust of ALL hearing parents - even parents who've demonstrated that they value the importance of giving language to their child. I've said before that ASL should be the child's primary language - it just makes sense. It's the language that suits him. But only because it aids the child - not because it will bind him to deaf culture. I guess that's my only strong hesitation.
I love a diverse community. I love mixing with people of other cultures and backgrounds. I fundamentally detest an attitude that limits someone to only one culture, and prevents interaction. I guess that's the attitude I sometimes detected here, and was trying to speak against. I do apologize if I've woefully misunderstood the posts here.

Well, I think some of the more militant, exclusionistic opinions you've read here tend to be indicative of a vocal minority. That's generally not the sense I get.

Thanks for allowing us to see how things go with Ellis and you all. I keep on learning from you and admire your courage and acceptance of Deaf people's reactions lately. I was actually hoping that you do not drop out from blogging after what happened about a month ago.

I have been saving your blog for my classes to show how hearing parents can manage to keep everything balanced by allowing their child to be raised bilingually.