Monday, January 21, 2008

Humble Pie

Hi Everyone. Today's blog will not mention the cochlear implant (except for just now) because I'm going to take the humble road in this post. Deafread.com is kind of acting like God watching over his children in this moment, waiting to see what will happen. A lot of bloggers/vloggers are pissed off and hurt at this moment...rightfully so. I left a comment of this nature on one of the blogs, I'm so out of my mind in this period that I can't remember which one, but it went something like this: If members of the Deaf community stormed the Pediatric Cochlear Implant Circle with aggressive views, defensive attitudes and contrary thinking, I would be overwhelmed and saddened that our trust, raw feelings and beliefs were being violated. The Circle is a community of parents who share diverse ideas and methods of communication to help their kids grow and become complete human beings. Moi said, "I want to cry. I really do. It's painful for me to go to DeafRead now for so many reasons." She wrote such an eloquent and thought-provoking post (and said I had a good sense of humor:))and I understand where she's coming from, because deafread.com is a place for the Deaf community. As I have said before, I am here to share. Other hearing parents are becoming more and more involved because they NEED a dialogue with the Deaf community. While my son is very successful, there is a part of his personality that is so supersensitive that a person who has not lived his Deaf experience, I am afraid will never truly understand him. This sensitivity is why I came and why I intend to stay...I have found this type of emotion in so many blogs. It's not about telling anyone what to do, it's about listening and learning. Human nature often causes us to defend our most difficult choices to look for some type of affirmation. Realize this and give some affirmation instead of being insulted or pushing away people who have sought you out when they could have stood their ground elsewhere. Lotta hurting people out there, time to start healing, moving on and growing. It won't happen overnight, but I am not going away unless deafread.com throws me off...and as far as I am concerned, we are all created equally in God's eyes.

21 comments:

Valerie said...

I understand and agree. I submitted my blog to deafread. Little did I know they would pick it up. I never in a million years thought a bilateral cochlear implant adult would have her blog on deafread. I looked at it as an honor, it meant I was now part of the Deaf Community for the first time in my life.

I sit at my computer each morning before I go out into the world and read your blog. I come home from my adventures and read your blog again. You create the words I could never find. I laugh with some of the same experiences and cry when I feel your pain. With or without deafread, I will be here everyday.

Now it is up to deafread to decide if they want us. It is their choice, but one thing I know - We are part of the Deaf Community - hearing, deaf, hard of hearing and family. With all of us we can make a positive impact in society, hands and voices!

A Deaf Pundit said...

Thanks, Jodi. I for one, am glad you are reaching out. I think the onslaught of the CI blogs all at once was a bit too much, so people were reacting to that.

I think if people just cool down for a few days, we'll be okay as long we try to show respect for each other. We have a lot to learn from each other.

There are many of us who do want to see you guys on DeafRead. It's just that our comfort zone has been taken away. It'll take time for us to adjust.

Unknown said...

Whoa, Val,
Thank you so much...really. I read your blog, as you know and I am learning a lot from you as well. Thank you for your comment, now I really am humbled:)love, Jodi

Unknown said...

Dear A Deaf Pundit,
I'm chilling too, don't think this is so easy for me. It's easy to be all the way over here in Italy and type to send a message, there are so many people there afraid to speak. None of this is easy, but I sure as hell am having fun meeting people like yourself...Jodi

Anonymous said...

Thanks for your blog!
Have learnt a lot from you

Anonymous said...

I haven't read other posts...it seems to me that the *lack of respect* toward sign language in your previous posts is what sets the storm off.

I mean the lack of mentioning sign language in your posts. You and the medical community don't advocate sign language.

That's what we're upset about. It's never about the C.I. itself, but the act of not acknowledging the beautiful sign language that binds us in the Deaf community.

C.I. itself is a non-existent issue in my view of Deaf community, really. Get it through your head..CI is NOT the issue, but the lack of acknowledgment of sign language is the big issue here.

Anonymous said...

Hi Jodi,

Due to my insane schedule I haven't been able to respond to posts and I'm so far behind. Will try to dump all my thoughts in here because who knows when I'll get an opportunity to reply in a timely manner...

Anyway, please do keep on posting here. You are VERY welcome in DeafRead. In fact, you are one of few pro-CI people whose posts I can read -- and enjoy -- without feeling that sickening "fix it" stomach churn. (More on that in a moment.)

You write in such a manner that we can let our guard down and learn something. It's like talking to an old friend. You've shown a willingness to want to understand our perspective and that makes me want to understand yours. It improves our ability to find common ground.

In fact, one of your posts that I never got around to responding to (but REALLY wanted to) was your comments about your friend Rhonda back in Texas. You remarked that there are conversations that only the two of you are capable of having -- no one else in France "gets it." I was smiling and saying "EXACTLY!" when I read that. I wanted to direct you to one of my own favorites -- if you read Deaf Thanksgiving (www.deaf-culture-online.com/deaf-thanksgiving.html) you'll see almost exactly the same story. I'm eager to share it with you because I'm know you'll understand.

I also loved your entry about the deaf and CI camps being tempted to "cheat" on each other even though they're essentially married to their own communities/ideals. That was a nice analogy there. I wanted to throw in my own analogy -- not really a response to you, but an effort to get some of the other CI posters to understand why some of us have cringed at the onslaught of CI posts.

You know when you walk into a hospital and there's that smell? That old hospital smell? No words are needed to describe it but boy, does it make one's stomach churn! Many of us feel that exact sensation when someone mentions hearing aids, speech therapy, and cochlear implants.

I know you said you're tired of people bringing up the "they wanna fix us" angle... but as one of the people who has felt that way and written/presented about it on numerous occasions, I'd like to clarify that I don't view CI parents as brainwashed members of the Cochlear Corporation of the Borg mindlessly droning you must be assimilated. Instead Im actually more concerned about deaf children perceiving that they must be fixed. This can happen even with the most loving, supportive parents. It can also be easily addressed but that's a topic for another time. I'm taking up all your space here LOL...

The only other thing I had to add, off topic but so what... noticed you guys are baseball fans and I read about Cal Ripken in your book website. Just wanted to let you know my son Darren (who just turned 9 today) is a huge baseball fan and we have Cal's AWESOME instructional videos. Am mentioning this because they happen to be closed-captioned. Darren is thus able to understand everything and he eats up every word. Wondering if you guys had anything to do with this? :)

Gotta get going... but thank you for taking the time to reach out.

Best regards,
Drolz

VBnBama said...

I did in fact have a rough night last night w/the a few of the comments I received. I was told how awful I was, etc. Anway I did ask to be removed from deafread as I felt like my intentions by a select few were way off. I do love learning from others but when my six year old is standing over my shoulder trying to read how awful his mother is, I just had to click delete. Most everyone has been nothing but nice and I truely appreciate that. I have my favorite blogs that I've picked up from there that I'll continue to read but I decided that those who are interested are still welcome to visit but clearly there are some that do not want me(as a hearing parent) there. I'm not intimidated, just saddened that those few people (anonymous people by the way) didn't have enough control to not post a comment. Some thoughts shouldn't be expressed, and I hope that in the future those few people (or person for all I know, it could be one individual making multiple comments)take into consideration that we are human! Most of us that can keep carrying on dialogue, are the ones that can say to ourselves "I don't know everything, I need to hear other people, I want to learn more." and Jodi, is your email still down?

Unknown said...

deaf single,
I appreciate your comment *smile* Jodi

Unknown said...

Anonymous,
I hear you, but I'm not going there because I wrote this post today to listen and not speak. Jodi

Anonymous said...

Aww girl!!!

The most important is "BE YOURSELF" don't let others rule your world..you are human!!

I love your blogs, please keep going as you will always will have some pro-ci's or even pro-orally who doesn't sign fluently or none.

Hang in there,

Susan

Unknown said...

Mark,
There is only one thing sexier than an intelligent man, and that is one who knows how to write and express himself:) I will check out that link you've suggested, by what you said, you got what I was trying to say - makes me way happy. The hospital odor comparison was strong enough for me to comprehend, also because after the ci surgery and staying there a week during Christmas, I have panic attacks anytime I'm near a hospital. I hear ya.
I appreciated your comment that ci parents are not brainwashed by ci companies, because we are not...it would be way to convenient to say something like that. We make our own choices and do a lot of research. Perhaps the information is lacking? or just needs to be amplified to include all perspectives. For now I'll feel around and see what could be possible. My head is exploding in this period with so many exciting things happening that I can see and almost touch. If one thing goes right and I can touch it...I can do something important...waiting and waiting...Thank you for your honest and informative post.BTW, I forwarded your comments to the Ripken organization where I am in contact with an individual...really nice, supportive organization - no endorsement yet, but I'm working on it. They were very pleased to receive the comment, I had nothing at all to do with the captions - I am not involved with them, but they were happy to receive the news. They are truly a high-class organization...big hug and I look forward to your next incredible comment...Jodi

Unknown said...

Val,
First of all my email is thankfully working again, so write me. You aren't the only one who has been discouraged and I can understand your sadness. I'm really sorry that happened. Kiss those beautiful kids for me, Jodi

Kim said...

I am now very sorry I haven't supported Val more. :-(

Like you Jodi, I'm here to learn. I see both sides of the CI debates with regard to implanting children. To explain why I'm on the fence would take a blog.

I'm honestly not sure what I would have done in your shoes. It's one thing to say, "I would never do that." and another to live it. It isn't ALL about the parents either. It's about each individual and their own personal life experiences with deaf/Deaf people, the environments they grew up in and where they're at today. All these Deaf who say they would NEVER implant a child-- IF they had grown up hearing, I bet they WOULD.

Anyway, the fact that you have a bilingual family and are living in Italy is HUGE. Now you're not talking about learning just one sign language but two. Where does this end? Do you want my opinion?

I don't know enough of other the parents' stories to know what factors influenced them to make the decision to implant or not to implant.

The parent in Mishka's blog chose not to implant because she had been exposed to Deaf people who reached out to her family at a critical time when they needed support. What a difference that made! How often do parents get that kind of support from the Deaf community? I don't know.

Yes-- you're right about the insecurity. Because we're not hearing and we live in a world geared to people who can hear, who expect we hear because deafness is invisible. We MUST be accepted as deaf people first and come to terms with that. There's a tendency among the late-deaf to get stuck in denial. We get stuck there because everyone else around us also denies that we're deaf-- as if it's an ugly word.

You feel like you want to scream, "I'm DEAF!!" because they're all denying it long past the time you've accepted it and moved on. Why can't they accept the deafness? Is it THAT ugly?

Unknown said...

Kim,
People fear what they don't understand or aren't familiar with. It takes education and information to overcome ignorance. Been there, lived it. Thank you for your comment, as always, Jodi

Unknown said...

Susan...thank you, Jodi

Abbie said...

I agree with you that the flood of CI blogs on deafread have indeed created a little animosity and the wrong people are taking the brunt of it.

We don't go rushing over to a neighbors house that we never met to influence the color of their house. We start off by introducing one another, maybe borrow a cup of sugar or in your case Jodi flour for the pasta :) and then graduate to parties. My point is that this could have been done in baby steps but regardless we will hear some opinions that are not so nice but then some that are really nice. The inevitable is heart breaking but like you said I'm not going anywhere, I have a lot to learn, to give, and countless of opportunities lay ahead to spread that.

Karen Putz said...

Jodi,

Mark is a great guy with a level head on his shoulders. He always makes me laugh, smile and think when he writes.

If you want some great books to read, pick up Mark's. I guarantee you won't be disappointed.

And no, Mark didn't pay me to say this. :)

Anonymous said...

Thanks for your blog.
I always learn a lot from you...

Anonymous said...

Jodi,

I have been reading your blogs and comments with great interest and open heart. You are where my parents were 30 years ago. I know my father would have loved to carry many conversations with you. There are so many stories about my parents I would love to share with you. My email is Julie@smariosoft.com. I am married to an Italian-American family, but my mother is from Spain so I grew up spending my summers in Europe. I look forward to connecting with you.

Warmest,

Julie Rems-Smario

Unknown said...

Julie,
Hi! Thank you for your message, I will contact you in the next couple of days. Tomorrow is my craziest day! And it's 10 right now, gotta hit the sheets soon. My email address is jodi@rallycaps.net if you want to drop a line...*smile* Jodi