Wednesday, January 30, 2008

You "FIX" a Dog or a Car...not a Deaf Child


I think Mishka and I may have just had our first lovers' spat. I dig Mishka and her commitment to trying to figure something out in this whole mess of differing opinions, suffering souls, passionate voices, and a long, strong tradition of community loving. I don't care where she stands in regard to acceptance of the Cochlear Implant, it's all about awareness for me. As I've said before, I am here to share. Mishka, for a series of motives believed that I attacked her in this part of yesterday's blog:
And one more thing...COCHLEAR IMPLANTS ARE NOT A FREAKING WAY OF FIXING YOUR DEAF CHILD...CHOOSING TO OPERATE ON YOUR DEAF CHILD IS A PAINFUL DECISION FOR A PARENT TO MAKE, PAINFUL, BUT WORTH IT...AT LEAST FOR MY KID. AND COCHLEAR IMPLANTS ARE A PROCESS NOT A CURE. SO...WHO EXACTLY IS THE WORSE PARENT HERE- LYNCHED MOM BECAUSE SHE GAVE BACK HER DEAF KID...OR ME? AFTER ALL, I "FIXED" MINE. DON'T BE SO QUICK TO JUDGE.

Yes, I was pissed off, but not at Mishka, at the continued use of the word "FIX" by certain members of the Deaf community in conjunction with the cochlear implant implying that a parent sees a defect in his or her child and feels the need to fix it. My child is just perfect the way he is, sensitive, stubborn, annoying as hell, intelligent, hormonal, "hearing" and deaf. Actually, if I could "fix" something about him, the deafness would not be the first thing:) I would choose. Honestly, I don't think I would want to change anything about him, because every moment is a new discovery. His deafness is what makes him special, his ability to hear and communicate in a world where the majority of the people are hearing enables more people to learn about, celebrate and share in his life.

Comment left by me on Mishka's Blog at midnight my time, need I say how damned tired I am today...
Mishka,
I DID NOT realize that you took my words as an attack on you. First of all, when I put words in all caps it’s not to scream, it’s to make them bolder and emphasize a point I am trying to make. I have no reason to scream at anyone, especially you, you left the nicest congratulations message about the book the other day. What in my behavior towards you could have ever made you think I was screaming??? I cited your post there because it was relevant to the adopted parents aspect of the post and you had blogged about that AND reused the word Fixed that drives me crazy for all of the above reasons. What in my past blogging behavior would have ever caused you to think that I was personally attacking you? That post had nothing to do with you, it was about looking at the parents’ choice to give back their deaf baby and yes, the kicker here and the point of that comment I made was that this family gave back their deaf child, and the Deaf Community reacts as a collective. I chose to implant my son and the Deaf Community considers that I am trying to “fix” something that is broken…way too easy to vilify instead of comprehend. You were just another member to use the word…why did you take it so personally? Jodi

Hmmm. Why did Mishka take that comment so personally? I have been reading her blogs the past four weeks and she has been taking a lot of heat from all sides. Mishka, you will get no heat from me, I'm just sitting back and observing.

Words are powerful, we play with them and people on a daily basis...just check out Paotie - live for him. Be very careful with a word like "FIX," because the Deaf Community blew away the denotative significance of the word, and now it is all about the connotative meaning that I perceive as an unfounded accusation. I perceive this, as do other hearing mothers...as you can see in the 140+ comments left on Mishka's blog. We are here and we are listening...are YOU?

I loved Paula's blog in response to all of this...thank you, Paula
I loved KP's comment left on Mishka's blog:

I would love to be able to immerse my son with other deaf people; however, I don’t live in an area where there are a lot of deaf people, the deaf community is over two hours away. I’m also afraid to reach out, because of some of the militant anti-CI deaf people. I am afraid they will call me a Nazi and tell me that I should hang for my choices with my son. I am afraid that they will make comments such as my son is a robot, has a hole in his head, a chip in his brain, can’t play sports, can’t get on a plane, can’t go swimming, in front of him and none of those things are true and would hurt him as well. I don’t want to willingly put myself and my son out there to be lashed at. I realize that not all deaf people think this way and will not act unkind to us, but it is the ones who will that deter me from even reaching out. I had someone berate me for choosing to implant my son, told me that I should send him to the residential deaf school two hours away. What? I can’t do that, God gave him to me, I want him with me. Is it selfish, yes it is. I want him to live with me, I want to talk to him about school everyday, help him with his homework, attend sport activities with him, I want to pray with him, read to him, play with him. I want to be with my son. I don’t want to send him away 5 days a week and see him on weekends and holidays. I want him to go to the same school as my daughter and his cousins. I want him to be able to go to our church’s youth activities. I want him to have the same opportunities as my daughter even though he is deaf; which is growing up with us, his family. I don’t want him to think that I was ashamed of his deafness and sent him away to live with the deaf. If the CI can make it possible for him to stay with me and it works for our family why can’t people embrace my decision for my child? Why can’t they accept it and say, “Well, that certainly isn’t what I would have chosen but I’m glad that it works for their family” and be kind and teach us about the deaf culture. If the anti-CI militants spout hate what’s going to make my son want to join the deaf community? Why can’t he be a bridge between the deaf and hearing? My son will most likely be ostracized by some hearing people as well because he is deaf and has an implant. They just won’t get it, he’s different and that will be enough for them to make fun of him.

As a mother; and any mother, deaf or hearing will know exactly what I’m talking about here, I can work up enough things to feel guilty over, to feel bad about, to make me feel like a bad mother. I don’t need someone pointing a finger at me and telling me how bad I am for just wanting to give my son the best opportunity to be with me and his family and enjoy the same opportunities as my hearing child. Every single person has been made fun of and kicked for one reason or another, people can be cruel, but that is all the more reason we should be kind and embrace one another. Because we all know how it feels and we all just want to be accepted for who we are.

So in all of that, if you want to say “fix” then by all means go ahead. But I do not agree, if my son’s hearing was “fixed” he would be able to hear with no processors or AVT. He would have come out of the surgery and said, “Hey mom, I can hear and I love you too.” But he didn’t. I had to wait until he got his assistive listening device, the processor and coil. Now I’m enjoying watching him get caught up in speech and language, hearing him come up with new words, being able to tell me hurt and hot, but by no means has his hearing been “fixed”.

Melissa rocked and wrote:

As a hearing parent of two children with bilateral CIs, I don’t think it’s the word so much as the phrase. I didn’t fix my children. The hair cells in their cochlea were missing and/or damaged, and so I gave them a prosthesis for them. In that sense, I “fixed” their hearing, although, as Jodi said, the CI alone didn’t do it. It took A-V therapy as well. My younger daughter had knock knees. She had surgery to correct them. We certainly fixed her knees. I guess I just don’t have a big objection to the words “fix” and “improve” as long as they are applied correctly. I love my children and wouldn’t change who they are as people at all, but if there is something wrong with them physically in the future that can be fixed or improved, we’ll fix it. Saying that in no way implies that I want to fix my children, which has a much more all encompassing meaning to me.


BTW, if one person in the Deaf community re-thinks using the word "FIX" when referring to a mother's choice to implant her child, this blog will have served its purpose.

PS. Hot news of the day...I was reading "BROWN BEAR" to my preschool beasts when the little ding of a text message sounded amidst the miraculous silence. I flipped open my cell phone and saw the words "THE END"...yeah, that was my friend and translator Rosy telling me that she had just completed the Italian translation of RALLY CAPS. Flying!

24 comments:

Karen Mayes said...

Congrats on your book!

Yeah, I understand your point of view. I read Diane's comment which was gently reminding all of us that we had different definition of "fix". As I said in one comment, my daughter, upon learning she might need new glasses, stated that the glasses would fix her eye (7 year old) and I did not think any about it until the word "fix" was brought up. I realize that we have different readings into certain words.

I love you blog by the way. Yup Paotie is smart... has a deep understanding of words and I am learning everyday from him, believe me! I love him and my husband digs him.

Anonymous said...

Yeah, Jodi.

The way of the deaf community is.

It has been pretty long time for debating the definition of the "fix."

However, we *CANNOT* change the way of the deaf community's psychologies.

Politics are politics.

I am with Karen.

Believe me, I *LOVE* Paotie eventhough I don't agree with his views on many issues. He has his own heart. I have respected him for who he is.

White Ghost

Unknown said...

Thank you, Karen...I always enjoy reading your thought-provoking comments that are just all over the place on deafread! Jodi

Unknown said...

White Ghost,
That was beautiful what you said about Paotie...
I don't think I want to change anyone's psychologies in the Deaf Community, but I do hope they think twice about using the word on my blog in reference to my motives for implanting my child...just asking for a little more sensitivity in regard to that...this is not an overnight thing, it will take a while. Thank you, Jodi

mishkazena said...

Jodi

I didn't know that the word itself, fix, is considered incendiary by the hearing parents of c.i. kids. I started the series on cochlear implants simply because I am unfamiliar with them. Unlike others, I've been pretty much absent from Deaf Community for a good number of years until last year. So I wasn't prepared for the furor I ignited yesterday. I also resented the accusations of me trying to stir the pot, when they don't know me personally, making unfounded assumptions about me based on what I wrote. What I write not always reflects my personal values, but as a sounding board of other people's views.

However, the posts I created two days and yesterday were of personal nature as a deaf blogger with feelings, not as a neutral person doing a series on cochlear implant. The thought of a deaf child abandoned again, after cochlear implants and hearing aids were found unsatisfactory for that poor child, hit me very hard, just like it did with other people. We know too many deaf kids and adults who were rejected by their parents because they couldn't hear and talk. This happens more common than many hearing parents realize.

One big disadvantage I see is the unfamiliarity of deaf culture and history. Even though some parts are in the past, any sociological scholar will tell anyone the culture is shaped by its history. Many deaf people aren't treated well by hearing people and their anger arise from these wounds. Unfortunately too many hearing people don't see Deaf people as equals, treating them with condescension and patronization, as if they are stupid because they cannot use their ears and mouths. On the contrary, many deaf people are very intelligent and proud, versatile in their own language

Yes, with the link to my post, I did take your capitalized words as screaming at me and felt offended because I didn't understand why you were screaming. Now I realized that you weren't aware that capitalized words are considered screaming on the Internet. It seems you and I have to learn some from each other.

I have sent you an e mail last night, but I don't think you did receive it. Please contact me at mishkazena@aol.com Thanks

Peace

Elizabeth

Unknown said...

Elizabeth,
Thank you so much for your letter, I did not receive your email, and I will contact you now.
Really, your post shocked me and it took me at least three times reading your comments to realize that the "person screaming at you" was me...that's how much I wasn't screaming at you:)
Peace back at ya,
Jodi

Karen Mayes said...

I remember when my father started using emails several years ago, he started with ALL CAPS... I was not sure if he was happy or upset until my sister finally told him the equiotte of emailing.

It was funny though.

Anonymous said...

Hi Jodi,

I'm deaf, but I am also one who has declined the CI because I had already had a lifetime of using the hearing aid and I was comfortable with it.

Anyway, I just wanted to say that just like every other known group of people out there, the deaf community has its extremists. Islam has theirs who are bent on subjugating the world to Islam. The Christians have theirs who are bent on taking freedom away from women who want the option of abortion. Then the deaf community has theirs who are bent on making sure that every hearing parent out there follows their rules when it comes to raising deaf children.

When you're dealing with these extremists, always remember that the majority of the community from whence they came don't think and believe the same things the extremists are spouting. Rest assured that for every extremist you encounter, there are probably ten or more non-extremists. It doesn't seem that way because the extremists are the ones who make the most noise.

The one common theme amongst the extremists of the world is the use of propaganda heavily sprinkled with negative connotations in order to paint their opponents as being bad or evil. The Islamic extremists use words like "immorality" to paint the pro-freedom people as being evil. The Christian extremists use the word "murderers" to paint the pro-choice people as being evil. The deaf extremists use words like "fix" to paint the pro-choice people as being evil with intentions of destroying the deaf world.

I understand you're a parent of a deaf child and I understand that you've gone through a tough time making the best, informed decisions you could regarding your deaf child. I'm a parent too, though both my children are hearing, I can empathize with your situation as I've had to make tough decisions regarding my children too. I can tell from reading your blog that you're an intelligent and caring woman so I'm sure that you are a parent who wants nothing but the best for her child and I know you've gone to extreme lengths to be sure that you made an informed decision. I, for one, admire you for your strength and ability to stand up to the extremists and say "I made the choice for my child that I felt was best for my child". Good for you!

Bottom line? Yes, there are deaf people who support you. Yes, there are deaf people who believe you have the freedom to raise your children in a manner you feel is best. Yes, there are deaf people who will welcome you and your deaf children in the deaf world regardless of the choices you make.

You've got a supporter and a friend in me, a deaf man who chose not to use the CI, but knows that others may find the CI useful.

Chin up, smile, and be proud.

Anonymous said...

"COCHLEAR IMPLANTS ARE NOT A FREAKING WAY OF FIXING YOUR DEAF CHILD...CHOOSING TO OPERATE ON YOUR DEAF CHILD IS A PAINFUL DECISION FOR A PARENT TO MAKE, PAINFUL, BUT WORTH IT...AT LEAST FOR MY KID. AND COCHLEAR IMPLANTS ARE A PROCESS NOT A CURE. SO...WHO EXACTLY IS THE WORSE PARENT HERE- LYNCHED MOM BECAUSE SHE GAVE BACK HER DEAF KID...OR ME? AFTER ALL, I "FIXED" MINE. DON'T BE SO QUICK TO JUDGE."

Beautifully put!

Foster care in the United States is a sad tale, regardless of whether or not it involves deaf children. And it effects every American in the long-run when children are put into foster homes and abused and become children of the state. We ALL pay for it one way or another - deaf or not.

Anyway, good of you to extend the olive branch first. You're my hero!

:o)

Paotie

Anonymous said...

KP's comment: If the CI can make it possible for him to stay with me and it works for our family why can’t people embrace my decision for my child?

You CIed your son so he could stay in a public school. That is really ridicule!!! Well, you can send your deaf son to a public school without CI instead sending to deaf school. Get an interpreter! ASL is the way of communication. I am anti-cochlea implant on little kids. ASL is the best choice to offer without drilling the hole in a little kid's head!

Unknown said...

Slackinpenguin, *sniffling*
Whoa...that was a power comment deserving of its own blog, you are quite a writer and you just blew me away with your analogies and kind, sensitive words. Really, thank you so much...Jodi

Unknown said...

Paotie,
I agree with what you wrote, but it is obvious and apparent that when it is a deaf child who is involved it touches all of us in an even more profound way than had it been "just another hearing child." I'm not used to you being so sensitive, just another hot side of ya...Jodi PS. Did you notice that your fan club has stormed my blog to praise you?

Unknown said...

Hi Hedy!
You were one of the first people to ever comment on this blog...actually your first comment was a lot milder than this one to KP. Apparently my blog hasn't touched you or given you some more insight up until now, I hope that in the future my posts will help you to find a more comprehensive view on what the cochlear implant experience is for children...and their parents...thanks for continuing to read, Jodi

Karen Mayes said...

Hey Jodi, you strike me as a bold, yet emotional (in a positive way) woman totally in touch with who she is. You blow me away... wow.

Guess living in Italy does make women WOMEN :o) I don't mean in sex, but proud of being a woman, I mean...

;o)

Unknown said...

Karen,
What an interesting thing to say and a huge compliment, thank you so much. You know what...for the first time in my life after everything we've been through, I really feel like a woman...and that is kind of a dangerous thing *evil grin* It has nothing to do with Italy other than they just dress you better and do your hair much better over here. It's all about coming out of the tunnel and re-finding myself after so many difficult years. When your family is healthy, you can be healthy. I am truly fortunate. Jodi

Anonymous said...

Jodi, I have read ALL blogs about CI. I do not think to understand CI at all. I am not against CI children however I am against the IDEA of implanting on baby! That is my bold thinking.

Unknown said...

Hedy *smile* I respect your opinion, but aboveall, I respect that you continue reading about cis...I think that's amazing! Jodi

Anonymous said...

Jodi,
First regarding Paula's comments re: she would love to have her child and family socialize with other Deaf people but feels she lives too far away, then she surely isn't trying too hard. Our family came from one of the smallest towns around in a very rural area, but we were surprised that if we simply did our research, we would find some Deaf people to be our support system. And that is exactly what happened. So when hearing parents say this, I can tell it is a cop out and they really haven't tried.
Secondly, Paula is afraid she will be met by militant Deaf and is afraid this will affect her child. At least this is what I got from her email. That is nuts!!! I have been very involved with the Deaf Community for quite some time, and I have never met a militant person. I have met Deaf people with strong opinion based upon their life experiences just as I have met hearing people who are the same.
I am quite tired of the "militant' labeling. This really needs to stop.
My daughter is from a hearing family and is Culturally Deaf and we are very proud of her. And she is still part of our family.
Throughout Paula's comments all I saw was "I want" "I want".... Isn't it time for hearing parents to look at what the child wants. All you have to do is talk to Deaf adults and you will learn quite quickly what your child will want.

Valerie said...

You know what upsets me the most - not the word fix - but the idea that parents want to fix their children. I don't believe I was broken to begin with. I just can't hear. I use assistive technology to help. HA and CI just like FM systems and CART systems are assistive technology. They assist.

It is time for others to change their way of thinking, you keep doing what you are doing.

Anonymous said...

Hi Jodi,
When I get rich with lots of free time, I'll come visit you in Tuscany, and bring several bags of Starbucks coffee beans. You can take me to a good place to get my hair done.

Anonymous said...

i think that we only take "fix" personally because its like lipreading sometimes... a hearie will think that we are getting by good enough so they don't try as hard to communicate or deal with us. just my 2 cents.

i cant wait to get a CI...

Divided said...

Jodi dear...you did it again, your music sent me running to the front door thinking someone was there. Puhhh, I think I'm gonna need to put on my hearing aid BEFORE I come to your site! :)

Glad you and Mishka kiss and made up after all this...and I loved what you said as well as "Slackinpenguin". What can I say about Paotie..I've fallen for him too!

Ahhh...read one of your first blog and saw that you have a sister in NC. Curious to know if she is anywhere close to Wilmington?

Enjoy your capuccino while I get ready for bed! Ciao

Abbie said...

I am not so upset with the word "fix" because I think it just happened to be a word that popped in her head but it is upsetting when it is implied in a way that instinutes that deaf children are considered defective because of their hearing.

Anonymous said...

LOL at Divided for running to the front door. Doncha hate that!?!