Wednesday, June 17, 2009

Enough with the CI Blogs?

I read a blog post recently that basically stated that they were tired of the Cochlear Implant updates. No more surgery posts, IEP updates, mapping news or anything else of that sort. They wanted posts about Deaf Experiences. More emphasis on the whole person, not just their technologically enhanced hearing experience. Most of the comments were in full agreement.

I understand that Deaf Read was originally designed by and for Culturally Deaf people. But is it really advantageous to limit all perspectives but our own? If everybody is of the same opinion, there is no growth. No learning. No thinking. It is through the exchange of ideas that bridges are built and connections are made. Our Founding Fathers knew this. They made the free exchange of information part of our Constitution.

I will take things a step further. I believe that diversity is absolutely necessary, required and designed into us by God. We NEED to be unique. We NEED to have different opinions and ideas. God needs us to learn from each other, grow with each other and help each other. I believe that one of the biggest things we need to learn is tolerance. How do we engage in conflict resolution in a peaceful and respectful manner? We start by respecting and tolerating different people and different ideas.

Does anyone really have the right to say that since they no longer want to read or discuss something, that nobody else should blog about it? These are blog posts people. You have the complete choice on what you click on and what you don’t. If you don’t want to read about someone’s implant surgery, don’t read it. I guarantee that someone else is interested in it and is glad that post was put up.

Diversity, tolerance and respect demand that we try our best to allow each other room for expression. Yes, that blogger has the right to her opinion. She also has the right to tell us about it. I have the right to think that was disrespectful of her. I also have the right to keep blogging about the things that are important to me. And I strongly hope that her negative opinion does not deter other bloggers from putting up the posts they feel strongly about.

K.L.

65 comments:

Merry said...

I don't get it.

Rather that stating what they don't want to read X, why don't people post Y? (i.e. something they do want to read) That way, there would be posts to suit the taste of all kinds of readers.

margaret said...

,

Margaret said...

Those people want control Deafread. They whine tell people what do do. No like CI story, no click open blog. Simple solutoin

Me sick sick words audism, deaf oppressoin, audism, asl, audism. Me complian? No. Many people full, too. They complian? No. They no open blogs.

Me enjoy CI stories. Me learn lot. More CI stories me want

K.L. said...

People, please note that free speech is good. Insults and off topic comments are bad. Those won't be tolerated here.

Thank you.

Scope Dope Cherrybomb said...

Well said KL. Freedom to speak and freedom to click on something else. Tolerance is extremely important.

Anonymous said...
This comment has been removed by a blog administrator.
K.L. said...

Anon,
That is propaganda from 1993, and it is derogatory toward kids who get implants. Since it is already published in other locations, we do not need to publish it here. I get that you don't like implants. Please just say that, instead of trying to put negative pictures on this blog.

Anonymous said...

KL,

big deal if anon wants to post a link to a photo circa 1993. you yourself said that people can choose to click on a link or not. let them be and let them post links.

and negative is a state of mind. it may be negative to you, but to me it is a historical frame of where the deaf community was in 1993, and that times are changing. history should be preserved and be a good reminder of where we came from and where we can go!

Anonymous said...

I going to ask you k.l:

Are you boss of deafread blog website to make rule on deafread blog?

You are sound like that way.

Paotie said...

Gee.

What was the whole point of the Customization feature on DeafRead?



:o)

Paotie

Li-Li's Mom said...

I get the point that it would be great to raise the level of discourse in general beyond just the physical. But pointing to CI stories as the culprit, the topic that drags down what would otherwise be truly scintillating debate and discussion just seems a bit biased and well, somewhat mean-spirited. Judging the value of editorial content is tough with such a diverse group. One person may think reading about a child's surgery is boring and not journal-worthy, and prefer to watch an analysis of whether or not there really are unicorns or a long-running debate about diapers between a teenager and a community leader. Someone else may respond very differently to those offerings. But as you've pointed out, deafread doesn't require a Clockwork Orange-like forced listening/watching environment. We can skip or even block posts.

If it were another blogger, I'd laugh and disregard it. But I really respect Dianrez's perspective in general. I may disagree on some big issues (CIs, AFA's approach), but I've learned a great deal from her entries and stories about Deaf identity and I think she's a thought leader in the Deaf community, a wisewoman of sorts. So it cuts me to the quick to find that the small number of blogs detailing surgeries (really, just a handful) have offended her so much as to inspire that post. I don't really understand what brought about this post.

But another way to look at this is as a challenge or an inspiration: the call is for more analysis from deaf with CI, more of the 'why' and the 'what it all means' on a grander scale, more of what deaf with CI are finding after the big transition, how deaf w/CI are relating to the world around them rather than to the machine in their heads. So rather than take this as an exclusionary request, we can just step it up a notch and put some of our thought processes out there, overtaking what are seen as sometimes mundane reports of medical milestones.

kim said...

Thank you for posting this. I think any subject can become repititive after awhile.

On the other hand, I realize not everyone posts for my personal reading pleasure.

If I don't feel like reading about cochlear implants or audism, then I simply read something else.

I am very bored with DeafRead these days. I've got all my favs on my GoogleReader, and you are one of them! :-)

Dianrez said...

Appreciate the comments made here on my blog, both pro and con. I had considered myself a moderate on CI blogs until the recent publication of this blog: http://auditoryverbalparents.com/

For some reason I was surprised to find my dander up. Oh no, not again. Hence my blog "Enough with blogs about CI surgery!"

Folks, it's the medical model again denying Deaf people their history of accomplishments and insisting that surgical semi-hearing is required for success.

I promise to cut it out, at least for a while longer until the next time that fallacy gets broadcast again. Nothing like that to make a moderate into a radical.

diber said...

I'll admit, I haven't been following the discussion, but based on the comments here I did have a thought. Perhaps the issue is not so much down with CI blogs as a desire to see people be more reflective.

It can get formulaic: our surgery, our IEP, speech progress, etc. On the one hand, this is an easy way for parents to jot down and journal a process that very personal and interesting to them, but perhaps not as much the rest of us, because we aren't as invested in their kids. (And I will admit, I've had my share of those posts.)

But charts and data are dull and uninteresting (even if it's our own kid) without reflection, interpretation, philosophy, thoughtfulness. This is just a hallmark of good writing. There are many bloggers, but fewer writers. And at that point, as a reader, you have your own responsibilities to decide what you are going to read.

(BTW, as a matter of practicality. My link has changed. We're no longer "Moot Thoughts and Musings" at covblogs.com/diber, rather, we're "Ellis Island" at http://ellis-island.partialflow.com. Thanks for the link update!)

Anonymous said...

I had to laugh over Li-Li's Mom's comment, she certainly nailed it down in the first paragraph, unicorns and diapers notwithstanding.

True, the customization feature on DR is there for anybody who wants to use it, but I don't think very many readers use it as they wanna keep their 'ears' to the ground as to what is rumbling in DR. Pardon the pun, folks.

I don't speak for DianRez, but I do think that she (and I do, too)believes there is too much emphasis on the surgical aspects of CI (the fear)and the gee-whiz "I can hear birds tweet" stuff (the joy). I will add that I'm NOT culturally Deaf, I'm just plain deaf and wear an aid, ok.

What I would like to read about is how the CI impacts a deaf adult's life, both positive and negative. I know that the children who were implanted in the '80's and early '90's were not all successes due to the more primitive technology and surgical procedures used, not to mention factors that were not more carefully considered such as the age of the child, the amount of language acquisition before surgery, and the amount of parental involvement, for examples. The CI youngsters who were implanted at 18 months or less in more recent years are relatively young still and it's their parents speaking for them, an indirect kind of reporting. No offense, but it is still not from the horse's mouth, so to speak.

This is what I think many culturally Deaf and yes, even those who are just deaf or HOH like me, really are bugged about, that it is the PARENTS' view, not the actual CI recipient's view from childhood to a tax-paying adult. Unfortunately we have to wait a few more years, which by that time may mean that stem cell treatment will be coming onto the scene and may or may not transform the deaf landscape. *sigh*

There goes the CI and we are watching closely.

Ann_C

Anonymous said...

DianRez, I happen to agree with Li-Li's Mom's characterization of you as a thoughtful person who really considers the issues. The Auditory/Verbal site you mentioned is a blog, not a single post. I know Rachel Chaikoff and her mom Melissa haven't won many fans on DeafRead for their notorious comment, "I don't need ASL." That definitely ruffled a lot of feathers! But DianRez, have you actually taken the time to read their blogs? Take it from me, they're fascinating. No, I don't agree with everything they say, especially about no signing whatsoever. But Rachel and her family's story is of tremendous human interest. Did you know that Rachel and her sister Jessica have Usher Syndrome Type 1f? Rachel already has constricted visual fields. I'm sure her mother is thanking her lucky stars that she had the foresight to have Rachel implanted, so she will be able to talk and hear. (Yes, I know many deaf-blind people are leading satisfactory and fulfilling lives. Not my point.) Aside from that, Rachel has had a whole bunch of interesting life experiences for such a young woman. She will graduate from college in 2010 and hopes to join the Peace Corps. Folks, if you want to read about a young deaf person who grew up with a CI, look no further than auditoryverbal.com. However, like the disclaimer goes, "Results not typical." I'm sure there are other young CI users who also use ASL and having enriching life experiences too. They are out there in the blogosphere too.

Dianrez said...

"Results not typical." Yes, that's true of the Chaikofs, and many other outstanding Deaf people we see in all aspects of deafdom.

Also interesting are the lives of plain, average deaf people using aids from none to the latest and hottest of CI's, that are never written about. We in the Deaf community know them and should be bringing out their stories as well to show that what makes them fascinating is not what is in their ears, but in their heads.

It's when these stories border on hype, "this can be you, too" that it gets acutely uncomfortable. When the CI is given all the credit, well....(stopping now before I violate any aggregator guidelines.)

BTW, Usher's syndrome is not all that uncommon. I have it, too, and recognize it as a condition where the CI can be more helpful than usual. Period. Give the Chaikof kids credit for their spiritedness, intelligence and creativity, not their devices.

A Deaf Pundit said...

Li-Li's Mom - I laughed out loud at your first paragraph. Classic.

I think the problem is, there's such an emphasis on diversity, but the notion of the CI itself is about blending within the larger society.

So for people to tell us, accept diversity, then turn around and tell us, but children need CIs, because their lives will be easier due to less intolerance and discrimination...

It's quite of a dichotomy, and I think that rubs some people the wrong way.

But I do agree with your post, K.L. There are many blogs that I don't read, because they aren't just interesting to me. I'm very particular in what I read. But just because it's not interesting to me, doesn't mean it's the same for everyone else.

Hopefully more of us in the Deaf Community will respond by not crying for censorship, but by responding with their own personal stories. That would definitely enrich DeafRead and the blogs in general.

MM said...

I posted such blogs often give out information to people who can then decide (Or not), if they want to proceed with having one. The comment was pulled.

The problem is from the anti and the pro side of CI's is this small sector of activism that won't accept any compromise. Deaf.read doesn't do its job properly of coming down on vicious attacks of bloggers from either side.

Anti-CI deaf thought with driving CI bloggers onto the 'Village' they would have the 'freedom' to talk about culture, sign and inclusions/access to their exclusion, this was seen for what it was, discrimination in most part.

CI people do need to be aware some of their sector are deliberately inflaming situations knowing cultural deaf are highly sensitive to CI's, and cultural deaf need to tone down the dis-information, scaremongering, and personal attacks, that promotes the usual responses. One blog has published 36 anti-CI rants in less than a year, much of the content is completely false, deliberately so, and misinformed.

CI people should not have been forced to go it alone, this set up a real barrier to peaceful co-existence and harmony. NO 'side' has the moral high ground,and needs to curb its more extreme faction.

Li-Li's Mom said...

Dianrez, I'm with you. Every child, every person is so unique, there's no possible way for any result to be typical. And yes, there should be an abundance of hope, not hype, in all of these blogs. Once we get past the scars and the mechanics of the CI, we need to start communicating some real insight. Not from just the deaf w/CI crowd -- we need more varied discussion of "who I am" in the deaf world and in general (and less attacking each other's approach).

I just took a look at my house, which appears to have been hit by a 32 pound deaf bomb with pigtails and work beckons, so I think insight from my site is a long way off :). I heartily recommend Ellis Island, which has plenty to spare.

One note: could be wrong, but I don't think the Auditory-Verbal Parent blog was put on deafread by the authors -- I think that link was submitted by a deafreader who wanted to stir the pot.

Paotie said...

Li-Li's Mom ..

You said: "how deaf w/CI are relating to the world around"

Likewise with culturally deaf bloggers - it'd be nice to see more culturally deaf bloggers blog about things NOT related to the following:

ASL
DBC
NAD
Audism
Deficit thinkers
Audism
AG Bell Foundation
Audism
"We can't win"
Audism
BAN THOSE DEFICIT THINKERS!
Audism

Just be glad I don't post a blog titled, "ENOUGH WITH THE DEAF AND DUMB BLOGS!"

But I might.

:o)

Paotie

Paotie said...

Ann ..

You said: "I don't speak for DianRez, but I do think that she (and I do, too)believes there is too much emphasis on the surgical aspects of CI (the fear)and the gee-whiz "I can hear birds tweet" stuff (the joy). I will add that I'm NOT culturally Deaf, I'm just plain deaf and wear an aid, ok."

You ain't got a CI, so who are YOU to tell CI bloggers what to write about or not? If you don't like it, don't read it. And if you want MORE CI bloggers blogging reflectively, I suggest you encourage culturally deaf bloggers to do the same - and be sure to include that they do NOT blog about the following:

ASL
DBC
NAD
Audism
Deficit thinkers
Audism
AG Bell Foundation
Audism
"We can't win"
Audism
BAN THOSE DEFICIT THINKERS!
Audism

And speaking of fear - do you not think that many CI bloggers are fearful to state that they are happy to call their hearing girlfriend on their cellphone, lest Dianrez become outraged over ONE blog and become a convenient extremist and attack them? Perhaps she'll find a CI blog she doesn't like, submit it to DR against the wishes of the blog/authors, and hope for another witch-hunt.

Eh?

:o)

Paotie

Paotie said...

Deaf Pundit ..

You said: "Hopefully more of us in the Deaf Community will respond by not crying for censorship, but by responding with their own personal stories."

Be sure to include that "personal stories" DO NOT include the following:

ASL
DBC
NAD
Audism
Deficit thinkers
Audism
AG Bell Foundation
Audism
"We can't win"
Audism
BAN THOSE DEFICIT THINKERS!
Audism

:o)


Paotie

Anonymous said...

If I see one more blog about a surgery, mapping, or a picture of a scar. I just may scream.

It is annoying. I don't open the blog...but just reading the first few lines on DeafRead, makes me gag.

paotie said...

Dianrez ..

You left a comment at a CI blog last year. Apparently, you and a bunch of people suffered rut-burns on your kneecaps because you did not approve of the way a CI blogger responded to a DeafRead Editor's claim that CIs were making CI deaf "obsolete" or something stupid like that (the fact YOU are discussing CI issues proves the Editor was wrong - as usual).

Now, let's look at your comment:

"In a rut" definitely wasn't the expression you wanted to use because by implication you meant that all Deaf people were in a rut unless they wore hearing aids or cochlear implants.

"Feel at a loss", "feeling lost" and "uncomfortable" would be better expressions since they refer only to your own personal feelings and do not imply negative things to other people who wear no aids.

--------

If it is not people writing improperly about the word, "deaf", then it is something else that you find fault with, such as "too much focus on medical procedures."

And to think that many on DeafRead claimed, "We can't win."

Uh-huh. Sure looks to me that CI bloggers cannot win, especially when you're conveniently extreme for the sake of propping up DeafRead's numbers (stirring the pot).

Good job.

:o)

Paotie

Anonymous said...

Anonymous, boy, you're quite sensitive if just the sight of the title words with CI in them make you gag. But ya know, those are your personal feelings and I am not going to debate you about the rightness or wrongness of your reaction.

Paotie, good point about the ASL- and Deaf-centric v/bloggers talking about something ELSE besides ASL, AG Bell, AFA, Mask of Benevolence, and deficit thinking.

For example, some of you may not know this, but Ella Lentz is famed for her beautiful ASL poetry. She's quite gifted at it, and watching her sign a non-political poem is a treat for the eyes. During the UFG protests, I enjoyed the video about Gideon, a deaf boy with deaf parents. It was so beautiful to watch the way he signed and expressed abstract concepts.

Now THIS is something I'd like to see more of.

Anonymous said...

I am a mom of a tween-age kid with CIs who definitely appreciates the fact that implants have given him more options for communication than he would have had without them. So I am a fan. But to tell you the truth, all those activation stories are pretty boring to me too (and I will bet most are written for an audience of family and friends anyway.) But all the audism-blah-blah stuff is boring too! Same people, same comments over and over and over. Get over it already!

So what is there to do? Write about nothing? Read about nothing? Are blogs on the way out in general? Maybe Facebook is the place to be, where the vibe tends to be more positive than the blog comments that just eat away at you regardless of what side of the deaf/Deaf fence you are on.

MM said...

Facebook doesn't tend to include the things deaf.read bloggers want to talk about,simple as that. Mostly facebook people are ONLY going to take input from people who agree with them, so that's another thing, you DON'T Get the diversity then, you get a group of people who mostly think and act alike, that is great I suppose for those who really do not want to get into areas where disagreement etc is the norm, but it does nothing to break down any barriers, indeed, it maintains and encourages those barriers, deaf.read is then a neccessary 'evil' and avenue to defuse and debate. You can't make an omlette unless you break a few eggs first.

MKChaikof said...

I hesitate to even post comments these days because I always get embroiled in a heated discussion, but here goes anyway...

First of all, I agree with Paotie - Where is all the negativism coming from? It's coming from a few (Note that I didn't and wouldn't say all) members of the signing deaf community. I have said again and again that the way to hearing parents of deaf children is through positive information and stories, not negativism and ugly accusations. What's worse is that recently Rachel and I have actually received threats hinting at violence towards us. What is rational about that? To me, anyone threatening violence loses all credibility. One instance was bad enough that we actually had to file a police report, and the police took it seriously enough that they are investigating trying to find the person. Have you ever heard an AV parent or oral adult threaten someone in the deaf culture with violence? I certainly haven't. Again, I know it's just a few that can ruin it for everyone else, but those loud few certainly create an impression.

In our recent blog, "Respecting Choices," Amy and I wrote about exactly that. We would never tell other parents what they absolutely had to do. We would never get angry at them for their choices, even if they chose not to implant their child and to use ASL as the only means of communication. Would we agree with that choice? No, but we would also agree that it would not be our decision to make.

Second, Rachel and Jessica are only two examples of many raised with the AV approach without ASL. What bothers me is that some don't seem to like that they are leading happy, successful and fulfilling lives. Why is that a bad thing? Why is it terrible for her to say that she doesn't need ASL but it's okay for others to day that they don't need spoken language? She never said she dislikes ASL, only that she doesn't need it.

Isn't or shouldn't the whole object of all of these discussions be to do exactly what I have done with my girls, raise deaf children to live fulfilling, happy and successful lives? Where the disagreement comes in is how to achieve that. I believe that it absolutely can happen with the AV approach. I have seen it firsthand with many children and not just my own. It is time for this to be recognized. Do I believe that this is the only way to raise happy, successful fulfilled deaf children to adulthood? No. In fact, I never said that. Do I think it is better if they can communicate with ease with the hearing world? Yes. However, I also don't think that that a deaf adult can't lead a good life without it.

The issue is parental commitment and involvement. It is when I read comments from deaf adults accusing parents like me of being lazy for not learning sign that I shake my head in wonder. As any parent who has followed the AV approach knows, we are anything but lazy. We don't just stick the CI processors on our kids' ears and say we're done. The AV approach takes at least a few years of time and dedication, and the basic premise is that it is a parent-centered approach. It is all done out of love for our children. Furthermore, we are taught to be totally on top of where our kids are with language. We would never keep pushing the approach if it wasn't working. In fact, no child who isn't successful with the approach remains at our center for more than a year.

Rachel put her story out there, and now Jessica, at age 14, is chiming in, because they want to let others know what life is like for older CI children and young adults who are happy with their lives, exactly as someone said.

(continued in next comment)

MKChaikof said...

(continuation)

The vast majority of us are not stupid parents. We've read thoroughly the history of deafness and what it was like for those who were profoundly deaf in the pre-CI days who were raised orally. While we also know several deaf adults who have remained oral and are happy for their upbringing and with their lives, we also went into this well aware of what to look for and to recognize if we needed to try a different approach, but we didn't.

Rachel and Jessica are not exceptions. How often do you hear a parent say that? They are examples of what is possible today with CIs and AV. It is time to stop the nasty accusations and focus, instead, on what is most necessary and most important, parents who care and are willing to dedicate the time and attain the knowledge necessary to raise their deaf children, whether that knowledge entails truly understanding the AV approach and working on language (Note that I say language for that is the emphasis of AV, not speech.) or learning sign. Are parents who send their children to a signing deaf school but don't take the time to learn sign themselves beyond a preschool level better parents than AV parents who are fully committed to teaching their children language? It's time to stop slinging unwarranted accusations at dedicated, loving and educated parents. By educated, I mean about deafness.

Dianrez said...

"Rachel and Jessica are not exceptions. How often do you hear a parent say that? They are examples of what is possible today with CIs and AV."

Enough said. Sigh.

Anonymous said...

Parent here agreeing that Jessica and Rachel are not exceptions. I know many kids with CIs like them (several dozen), my own child included. My son loves the fact that he can hear and often says so.

I know what you're thinking Dianrez and co. -- I'm deluded in thinking my child is happy and I will find that out one day. I am sure there is nothing to convince you otherwise, so stop reading. This is for all the parents out there reading who are considering CIs for their kids -- yes, they do work and kids are glad to have them!

Cochlear implants are the choice that gives our kids more choices in the future! With today's technology and early implants, kids can learn to speak with little effort and they can learn to sign if they wish. Without CIs, there are far fewer options. I found this out when it was almost too late. Thank goodness I didn't listen to the naysayers.

MKChaikof said...

Dianrez,
What does it say about you that you can only respond with flip comments but feel no need to comment about the threats of violence made against Rachel and me? Does your silence and the silence of others mean that you condone such behavior?

Anonymous said...

Paotie,

You know as well as I do that there are many CI surgery schedule, activation and mapping stories posted on DR and DV ad nauseam. I usually don't read those, as I often assume the posters are writing for the benefit of family and friends, and that's their right. Haven't got a thing against that. I said I "would like to read"-- nowhere in my comment was I dictating what CI bloggers should write.

As for "fear" that I was discussing in my previous comment, I was referring to the fear of the surgery itself, whether it would be successful or not. And those stories are a dime a dozen on both DR and DV. I know you're referring to the fear of a CI wearer breaking Deaf taboos such as calling their girlfriend on the cellphone, but that was not what I was referring to. Actually I would like to read about such reflections, rather than the "fear" of surgical results. But such stories would get vilified by the same culturally Deaf who complain about too many CI stories as well.

No, I don't wear a CI, but I may one day, hence my interest in the subject. I also am interested in how CI children fare in their lives, will they really do better as adults than the oral deaf generation before them? Only time will tell that, as many CI children who were implanted by 18 months or less are just now growing up, the first of them now in high school or starting college.

OTOH, I "would like to read" Deaf articles that don't attack others, hearing or little d, for being:

Audists, (au courant word now)
Crybabies,
Deficit Thinkers,
Mutilators,
Oppressors
Psychopaths,
Sicko's,
Sociopaths

...ad infinitum.

Before long, there'll be an alphabetical list of terms for every letter of the alphabet to apply. *roll of eyes*

And I'm not dictating to Deaf bloggers what they should write either.

Ann_C

Amy said...

Dianrez,

Our blog was not for you. It was not for Deafread. So it's pretty comical that you would complain about too much CI talk on DR.

To clarify: we are not unbiased. Oh, no. We are proudly, happily, clearly biased toward AVT and CIs, which we believe can and do work for most small children who are born severely to profoundly deaf. Our blog post was not about bias-- it was about the freedom granted in this country to hold whatever bias and belief one wants, and discuss it. And act upon it. Unless that belief infringes on your rights, you don't get to disallow it. I might think other parents should feed their kids more fruits and veggies, or that they should read more to them, or use a different disciplinary technique. But I don't get to decide, because they aren't my kids.

We never posted on DR, our posts are not intended for you unless you are interested. We are primarily blogging for the benefit of other AV parents or those interested, so that they understand the concept, where we are coming from and how we make choices.

DR can do whatever they want; I don't go around arguing that other blogs should stop discussing ASL. How silly. It's a free country-- blog away! I have never, nor will I ever, insinuate that someone should stop. And, I would never, as has been done by those on Vlog sites, insinuate that violence will or should be perpetrated. THAT, my friend, is purely wrong. Live and let live.

hearing friend said...

Melissa, Rachel, and Paula aren't the only ones threatened with violence. Many moderate deaf people reported bashing, with few getting death threats. Several complained of deaf people calling their workplaces in attempts to see them fired. These leaders and their followers use one well known deaf vlogger/blogger to make up lies, defaming outspoken deaf critics.

kim said...

I'm just wondering how many of you commenting in here actually read Dianrez's initial blog post. She never called for the banning of any discussion, and made that clear in follow up comments on her own blog.

Anonymous said...

I read it. Here is the link:
http://dianrez.xanga.com/704648908/enough-with-blogs-about-ci-surgery/

I wonder if she is just feeling a little left out and sour-grapey.

Dianrez said...

Melissa, it's understood that threats of violence, duress, etc. are never acceptable in any situation for any reason.

I don't condone it at all and am appalled that it happened because it hurts the cause of the ASL-using community.

But why bring it up when it is just one or two disturbed individuals that definitely don't speak for the rest of us?

Please believe that it's not typical and doesn't even deserve public acknowledgment. Turn it over to the police as you have done and forget it.

My original premise is that people such as your daughters are to be praised for their accomplishments as people, and that they would have done just as well in any case due to who they are.

It is doing them a disservice to credit any of those accomplishments solely to the CI, as there are also Deaf people who have accomplished the same things without it. The CI may make them easier, but is not essential to them.

MKChaikof said...

Dianrez,

I agree that my girls have not achieved what they have solely because of their CIs and AVT. They have achieved what they have because they had committed parents and because they are intelligent and determined. However, the reason I have discussed their CIs and AV is because the deaf community is saying that kids can't be happy if their parents choose these options for them.

I also have stated and do believe that having the ability to hear and speak well has afforded them some opportunities they would not have had otherwise. To cite a few examples, Rachel is able to edit sound, including music, in her films. She could still have been a student filmmaker but without the sound. She could still have learned French, but she could not have spoken French well and traveled to France and communicated well with the families she stayed with there. When she was in high school, she could walk around the corner and knock on her friend's door and ask her if she wanted to do something. If she couldn't hear and speak, that friendship would not have worked since the two girls could not have communicated with each other.

As for the violence - What bothers me is that it isn't decried on the deaf blogs. I'd like to see at least a few people say that, regardless of our differences, that is not the way to try to change things.

hearing friend said...

Dianrez, the threats of violence are not uncommon as you claimed. I was informed that the parents of five hearing impaired children with cochlear implants received similar threats. These threats were reported to the police. I didn't see any denouncement from the deaf community.

Dianrez said...

Hearing friend, that is news to me. I take it seriously and would blog about it if you can give me more details. What references can you give me, or names, places? Are different people making the threats? Anything I can check will be helpful.

Rachel @ Cochlear Implant Online said...

Dianrez...

I will not tolerate this comment: "Turn it over to the police as you have done and forget it." Threats should not be taken with a grain of salt as it CAN happen. Dr. Tiller was recently killed by an anti-abortion extremist, and in fact, he had received numerous threats prior to being killed. A security guard was recently shot at the Holocaust Museum by an anti-Semitic person. Those are just a few examples.

As my mom mentioned, the threat that I received was not just simply filed with the police. A few days after filing the report, the police department contacted me and said they're investigating it further to find the person. People can get arrested by simply writing threats in e-mails and online as I've seen cases on the news.

Because of the nasty comments on blogs and e-mails and threats that I have received throughout my life, I often feel that I don't want to take part of any activities in the deaf signing community due to the nature of my safety. I even have wondered if I should limit my advocacy for listening and spoken language and cochlear implants due to the threats, but I really do not want to minimize it because I am still creating a positive difference throughout the world for numerous deaf children and adults, and I want to continue to do so.

Jodi Cutler Del Dottore said...

HI K.L.,
These may have been the most interesting comments I've read in a long time. I've received the "enough ci stories" comment and the stuff about nausea, but I don't write the things I write for others..I write them to share my experiences. Overall, comments have been fine and if not healthy debate ensues and we discuss. I really like Dianrez's comments on my blog, they are always thought-provoking and thought-through.
I will say this, Dianrez writes:
Not considered is the person who may be intelligent, creative, skilled, experienced and productive. All that matters is the aforementioned two parts of his anatomy and their function.
...I have mixed feelings. I believe that what she is saying is true that the medical world approaches deafness in that way, and maybe that part is okay because there is a way to make non-hearing ears hear. It is ONLY okay because the important factor in achieving
"Not considered is the person who may be intelligent, creative, skilled, experienced and productive" that part is the role of the parents...and parents recognize this.
I don't know how you can change the outlook of the medical field because our ci kids are doing really well. What you can do is have a parent support team work with the parents educating them on deafness in general so that they have access to all of their options.

Hats off to Melissa, Amy, Jessica and Rachel, four individuals who have INTEGRITY, who believe in the choices they've made and who dedicate their time and energy providing information because when they went through this experience...it just wasn't there, so they know how that feels.
Really good post, excellent comments...such a pleasure to read something with substance...
Hugs,
Jodi

Li-Li's Mom said...

Much as I objected to Dianrez' frustrated 'enough of the CI surgery stories' on her blog and this one, I think it's really important to point out that she -- in no way -- has supported or instigated or condoned or ignored violence in any sense.

And I think that in further comments and discussions, we were approaching some common ground in understanding the issues. One one hand, Dianrez talked about backing off and accepting the surgery blogs as part of the transition, part of (some) deaf life. And some of us talked about laying off the heavy-handed hammering of CI as miracle, and narrowly focused journaling of listening and speaking as holy grail in a child's life when in reality, it's just part of our very whole child's life.

But, unless I missed the connection, we seemed to have taken a turn into a very important subject of violence here, but one that is very different from the issue posed on Dianrez' blog. I think it's really important not to associate her with the threats that some have be subject to. Or with silently condoning violence. If you've followed her blog and her comments elsewhere, you'd know that this is far from the case.

Rachel, I can see how you might take her comment about turning it to the police as a dismissal or toss off, but I she was unaware of continued threats (as was I) and think it was just an acknowledgment that yes, that's very serious - make certain action is taken. It's insane that our choices would inspire violence, and I'm sorry that you, that any of us, should have to experience that.

I think that issue of violence and threats deserves a post of its own from someone involved or knowledgeable about what's transpired, and shouldn't just be addressed as small part of a multi-part comment, easily missed in the scrolling. This blog might be a good forum to reach a broad audience.

I also hope we don't lose the momentum of connecting on common ground we seemed so close to before this issue came up. On all 'sides' there was a call for more blogging about d/Deaf lives and insights in general -- less competitively comparing and attacking of each other's choices, more positive hope and informed dialogue, less cheerleading hype and lecturing or confrontation.

More community.

I don't know. Guess we really didn't get there on this one. Maybe next time.

K.L. said...

Thanks everyone for the thoughtful discussion. Whether we want to admit it or not, we are all connected. Through deafness, through humanity, through life.

Open discussion is always to be encouraged, and violence is never the answer. Please keep talking.

Anonymous said...

Live and let live is my philosophy. Unfortunately, there are some in the deaf world who think the "medical model" and the "cultural model" are two discrete entities. Moreover, there are some who think CIs and AVT is equivalent to audism, and it's all the fault of AGBell. The violence and bashing are real. I long ago stopped using my "handle" because people know who I am, and so now, I only write as "Anonymous." Call me chicken, but I live and work in a hotbed of DBC and AVT fanatics. I'm honestly afraid of those people and what they might do to me, all in the name of their cause.

on another tangent, it may be that people in the medical fields do focus overmuch on the ear and the mouth of a deaf patient. That's their job, for heaven's sake! Maybe they don't spend enough time with their patients to get to know them as people with lives. I imagine most medical professionals may see their patients in the narrow view of their specialties.

Anonymous said...

oops, I meant to say "DBC and AFA fanatics"!

Paotie said...

Dianrez ..

You said: "Please believe that it's not typical and doesn't even deserve public acknowledgment. Turn it over to the police as you have done and forget it."

And then you stated: "Hearing friend, that is news to me. I take it seriously and would blog about it if you can give me more details. What references can you give me, or names, places? Are different people making the threats? Anything I can check will be helpful."

First, it was NOT typical. Second, you didn't know about other threats.

You downplayed and ARE downplaying the threats. Also, you seem to have forgotten the number of times Ella Mae Lentz, your Deaf Bilingual Coalition leader, utilizes the word, "violence" throughout her vlogs addressing the Mammas' article. One comment she left specifically states, "expect violence," and that includes, "self-defense" and "oppression."

Also, last year, your same DBC leader accused DeafRead of perpetuating "violence" against her and the "community." She objected to DeafHope - a domestic violence shelter - for its handling of a couple bloggers that she apparently felt contradicted the scope and purpose of DeafHope and its Tea Party.

In the comments below that article, you will see Patti Durr - the AFA leader - claim that people wanted Miss Lentz's "destruction."

So, the theme with the Deaf Bilingual Coalition is "violence."

Violence. Violence. Violence. Violence. Violence. Violence. Violence. Violence. Violence.

Got that?

It is so nice to know that the National Association of the Deaf supports "violence."

:o)

Paotie

A Deaf Pundit said...

Paotie,

This is my first and last response to you. NAD has nothing to do this. They don't even know about it.

Stop trolling.

Paotie said...

Deaf Pundit ..

National Association of the Deaf president, Bobbi Lee Scoggin endorsed the DBC in an interview with a college kiddo and addressed the "early difficulties" the DBC endured LAST YEAR.

NAD supports/endorses DBC. DBC's theme facilitates "violence."

Therefore, NAD supports "violence."

By the way, your vlog about the culturally deaf teacher who asked two males to drop their pants in a video comment was .. interesting.

:o)

Paotie

kim said...

I have to agree that when leaders talk violence, they perpetuate it. I have been shocked by the threats and insults lobbed at Rachel, Melissa, and even Jodi.

Many DeafRead bloggers blow it off as latent anger that should be expected because of all the oppression certain Deaf people endured at the hands of oralists.
And yet, while all this anger is being unleashed at innocent victims, we're supposed to believe that Deafhood is some kind of nirvana one can only reach by embracing ASL.

I understand the anger. We see a lot of that in the late-deafened community too. We expect it. We forgive. Grief takes many forms.

But the difference between the late-deafened and the Deaf is we admit there is grief to be worked through. We don't put a shiny shiney spin on deafness or Deafhood. We don't think it's OK to threaten innocent people with different ideas.

Also, our HLAA and ALDA representatives have been able to lobby for access without threatening violence. They've learned to focus their anger towards productive outcomes.

It really is up to the community to cry 'foul' when someone gets out of line. We all saw what happened to DP when she did that. Consequently few Deaf have the courage to take a stand against what they know is wrong.

Silence is a form of complicity.

Anonymous said...

Since we're on the subject of violence here, it's interesting how some culturally Deaf regard any criticism of DBC or AFA as "violence" perpetrated against them and the deaf community, when some CI and other outspoken deaf bloggers were actually threatened online and offline with violence by a few Deaf persons gone over the edge.

It's not a very impressive reflection on the deaf community when some Deaf bloggers/ readers don't make the distinction between "criticism" and the actual threat of violence. Like Dianrez said, threats of violence shouldn't be condoned by the deaf community, but this has happened repeatedly.

I understand that there is a lot of anger within the deaf community, but there are better and more CONSTRUCTIVE ways to deal with the anger than depicting "criticism" and the appearance of CI blogs as violence against themselves and the deaf community. I often read "Our Deaf space is violated by ______(you-name-it)", for example. The practice of exclusion begets cold-shoulder treatment and a lotta door-slamming. Again, it's the anger issue showing through. The outspoken d/Deaf bloggers have been pointing out this behavior time and again. The "critics" are but mirrors of a community's behavior, both good and dark sides, and ask "Is this what we really are and want to be?"

Ann_C

Dianrez said...

This discussion deserves to be continued on a blog devoted to "threats of violence in d/Deaf cyberspace".

Questions come up: are individual threats being compared with each other to see if the same individuals are involved? What is the scope we are looking at? Is the "violence" meant literally or figuratively?

No action can be taken without links, reports or factual references that can be checked.

Discrediting ideas, accusing people or groups because of their strong words meant as allegory, or words by anonymous crackpots isn't the way to go and further fractures the community.

kim said...

Dianrez-- I agree maybe it should be discussed on another blog. I find it difficult to comment on your blog because I don't use xanga. I have always wished you used a different blog domain.

K.L. said...

If you all want, I can post a short blog about the violence aspect of comments, but I won't have time to do any research. It would be very short, and basically just a place for people to hang their comments.

Jeannette said...

(btw, coming back a day or so later, thanks, Li-Li's mom, for the shout out about Ellis Island. We try to be philosophical. Perhaps that's a minority...)

MKChaikof said...

K.L.,
I'd be happy to forward the most recent threatening email that Rachel received that we reported to the police, but I don't think it would be wise to post it in its entirety while the case is still open. If you email me privately we can talk about it.

The one issue I think we can all agree on is that receiving a threat is bad enough, but having your child receive a threat is a whole different level.

Anonymous said...

Ella Mae Lentz is a Member at Large for the California Association of the Deaf (CAD). CAD endorses DBC and allows DBC to use its tax exempt non profit status. check it out here: http://www.cad1906.org/index.php?pr=Deaf_Bilingual_Coalition

Ella's partner, Judy Gough, is the 2009 CAD Conference Co-Chair.

NAD, on the other hand, seems to be a bit more neutral on the subject of CIs, AVT, ASL, Bi-Bi, and so forth.

http://www.nad.org/site/pp.asp?c=foINKQMBF&b=176627

I like how NAD's position paper promotes ASL, but still keeps "language" open, including English, and doesn't dismiss or denigrate other options -- the way DBC and AFA do. Plus, if you search the NAD web site for "DBC" or "AFA," the only thing that came up was that the NAD president was the keynote speaker at the DBC conference in June 2008.

I don't see NAD as endorsing DBC or AFA, Paotie.

kim said...

MK-- Yes I agree and I encourage both of you to start using fake names over the internet. Rachel has been far too open about information that should remain private. I have a daughter about Rachel's age, so I know how stubborn they can be about their independance :-). It really isn't necessary to send copies of the email. I too have been threatened, and also stalked more than once. This is the reason I've taken my picture off everything. There are crazies out there, both hearing and deaf.

Dianrez said...

Melissa, just a suggestion: show that email to a Deaf person who works daily with other Deaf people: a teacher, clergyman, social worker or club officer, who also knows ASL. You might be able to get information that could be useful in analyzing it.

starrynight said...

I haven't kept up with DeafRead or other blogs lately. I'm surprised about the threats and that is not acceptable.

Everyone have different views and beliefs and have to respect each other just like religions. There have been so many wars because of different religions. Now we seem to have a war between the Deaf community and the CI community on the blogs.

However, as a deaf parent of a deaf child with CI, I haven't experienced threats from the Deaf community yet probably because my child uses ASL and we still participate in the Deaf community although my child attends an oral/auditory program and a regular school with hearing children.

I try not to talk too much about my child's CI and spoken English to deaf people unless they inquire me about it. My child is taking advantage of both ASL and spoken English with her CI. I sometimes wonder why other deaf parents don't see this way as most of them still don't believe in CI for their deaf children. They probably are ignorant about today's CI as I used to be myself until I had to open my mind about CI when I noticed a lot of deaf children had CI at a deaf school.

We probably should consider creating a new organization for ASL/Spoken English (CI users and hard of hearing). I am both a member of NAD and AGBell as I support both ASL and spoken English. It doesn't have to be only one choice!

Brakeshoe said...

All of the blogs about CI evals, implant surgery, and remappings have been extremely helpful to me (and will be helpful to other CI candidates, too) when they make a go/no-go decision.

Here's why:

In my own research, I assembled a "consumer panel" of about 40-50 CI users on Twitter & Facebook, asking them about their experiences, both good and bad. I also combed through their blogs, looking for both data points and the occasional gold nugget.

Let me give you an example: @WendiWendy (Wendi Kast) writes about how, during her CI eval, the audiologist nearly took off her head. Go to:

http://suddensilence.wordpress.com/2008/05/11/the-ci-assessment/

...and scroll to the 8th paragraph et seq about her hearing aid "evaluation;" and then Abbie Cranmer's comment (third in the list) confirming what Wendi had needlessly gone through.

To me, as an electrical engineer and former hearing aid dispensing engineer, Wendi's blog post and Abbie's follow-up comment were pure gold nuggets.

Oh, and one last thing: I got to meet and talk to both Abbie and Wendi at the HLAA convention last week at Opryland, both of them in the noisy exhibit hall. They are both succeeding in understanding speech in challenging environs beyond anyone's expectations.

So, Yes, Wendi's blogging has helped, at least me, quite a lot.

Dan Schwartz
@Hi_Dan on Twitter

MB said...

I don't write to entertain strangers, I write to keep my family updated so I don't have to have the same phone conversation 50 times. If they aren't interested, they can go elsewhere!

Anonymous said...

OK so I don't see anything on this blog that relates to the population that has had a CI and discuss problems or issues.
My CI is acting up and will shut down many times during the course of day, without turning on for a long time. And since I live in a small town the doctor's office doesn't bother to return calls they are only pushing more people to have the surgery and already implanted to go bilateral.
NO HELP AT ALL