Wednesday, September 09, 2009

Protective

After some serious thought about what I’d ever hoped for from this blog, and considering the kind comments from you about whether to allow other sites use the content; we decided that it’s not the right thing for us now.

This has mostly been a personal memory book that turned into so much more.  While I love getting comments from old and new readers (oh come on… I wasn’t calling anyone old :) , it somehow still feels like an intimate gathering of friends.  I don’t want to wreck that by inviting controversy to the blog.

To some extent, I have purposely refrained from bringing in some of the unpretty aspects to the blog.  And the kicker?  They’re really not about what I actually go through as a deaf person.  It’s about what other deaf persons can do.

It’s been nearly 30 years, but I still struggle with the balance of a disability.  On here, it’s easy to forget and simply share the silly things that happened during the day – as a wife, mom, awkward girl.  It’s easy to pretend if I want to.

Out there… it’s harder to forget.  Consider last night – when I was trying to figure out what was freaking my poor kiddo out.  A siren?  An alarm?  Oh heck no… it was the sound of a moth beating its wings against the window.  How does a deaf person figure that out?

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There’s a security here – and I’m hoping to vent for a bit without the attention those other websites could bring.

See, deafness is unique in that many people believe an actual culture has developed from a disability.  And I understand the “rah-rah-it’s-differently-abled-not-dis-abled” rally, but the fact remains that there are things I cannot do, no matter how much positive thinking I employ.

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I cannot think of one other “disability” that has created such a culture.  To the point that some have become militant about it.  Criticism from all sides abounds.  So you have a deaf child… do you:

refuse to handicap her further with sign language – enroll in an oral program?

place hearing aids on her and treat her like a hearing child?

shun hearing aids, learn sign language and use only that method of communication?

send her to the state deaf institute so she can be surrounded by other deaf people?

put her in a special ed program and use rudimentary mime at home to communicate?

schedule surgery for cochlear implants and hope for the best?

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The only clear answer is that NONE of them are the answer for EVERYONE.

My mother endured much criticism in the decisions she made to give me the best chance at learning and communicating.  In fact, she first begged, then fought the school district to end the relentless teasing I was experiencing.  My parents sacrificed much to put me in another school.

Without an interpreter.  Without a school audiologist.  Without a million.and.one special education services.

Their instincts were right.  The year and a half I spent there placed me squarely in the “gifted student” programs later.  But more importantly, I had real friends for the first time.

Their decisions created: a deaf child who was usually able to communicate with the rest of her hearing world, a kid who had no trouble learning, and a third-grader who finally ventured out for recess.

So where did they go wrong?  Apparently many places.  The most popular argument would be that I’m ashamed of being deaf.  They would say I should never speak or use my voice.  I should only sign, and sign American Sign Language (not in natural English sentence structure).  I should not wear hearing aids, nor have any attempt to restore my hearing.  I should have been sent to the deaf institute (where once-upon-a-time the average graduate left with a fourth grade reading level).  I should socialize with primarily deaf people, and everyone around me should learn sign language to communicate with me.

So help me… That last paragraph makes me mad.

I still encounter it.  Deaf people who mock me for working, instead of sitting at home and collecting SSI.  Criticize me for marrying a hearing man.  Level their own derogatory terms for a “pretend” deaf person who speaks and signs with proper sentence structure.

Why do we shoot our wounded?  I think most of us moms want the best for our kids… regardless of any disability or special needs.  We want happy and healthy and well-adjusted kids who are adaptable and enjoy learning.  At the “end” of our parenting, we want them to become adults who will do the right thing and still love us.

This is no different simply by taking away hearing.

It is absolutely inspiring to me – to read about the devotion my fellow bloggers have to their beautiful children.  I’m sure many of them encounter their own version of social criticism – and they press on.

Please allow me to end this venting post on a sweet note.  Please go see these amazing bloggers… read for yourself what they are doing for their children and what their children are doing for them.  Be inspired… and surprised at just how many similarities we all have.

Keri at Life of Logan

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Melody at Slurping Life

melody

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Karla at Masto Mama Chronicles

Pray for Gavin

 

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K at Floortime Lite Mama

floortimelite

Just a few… now go hug your kids!  And sing all kinds of goofy songs with them… cuz if this deaf mom can do it and make her kid laugh, then that just leaves y’all with no excuses, eh? :)

25 comments:

Sande said...

Doesn't culture have a tendency to box us in, to want to control our response, to have expectations on behavior.

You and I, we all stand in the same place regardless of what we start with. Created to enjoy and be enjoy by Him, we can anticipate an amazing life, responding to an unpredictable yet pradoxial stable God and His amazing family.

Those who want to mess with our . choices and outcomes don't get that.

Came here to pass forward an award. No better timing really as you processing your journey in life has influenced mine. Come look.

Elaine at Matters of the Heart) said...

Oh how I have missed you guys.

wife.mom.nurse said...

Amen sister!

We have been well versed in this world and have worried about our nephew. Would he shun us one day because we are hearing. Would he be damned by what his parents chose or damned by what his parents didn't choose.

He, like you, has a optimistic, bright spirit. I love that kid so much. His smiles melt my heart. His hearing or lack there of does not define his character.

It took me awhile to even learn that you had hearing problems when I first started reading your blog.

We are here if you choose to blog about that aspect of your life, or choose to not go there.

You are loved in blogland.

City girl turned Country Girl said...

If there is any person out there that seriously thinks you shouldn't lead your life as you are then they are insane!!!! Having a hearing disability doesn't define you...You know I am 50% loss in both ears, now obviously I am fortunate enough to be able to hear what I do and I will never take it for granted...But this society and their expectations are just silly!!

Kudos to you for all you have achieved in your life!!!!!!!!!!!

Lisa said...

I see families on fictional television shows (like Law & Order for example) who don't allow their deaf children to socialize with hearing children, don't want to help them hear, etc. but I must admit I have no real grasp on this idea. Why on earth would you not want what is best for your child, or yourself? Wether that is sign language only or surgery? Shouldn't each family/person decide? I just can't help but think some of that sounds so hindering. There is no way ANY parent could look into the future and choose the exact right path for their child. It is a feel-as-you-go path, I would think. I am so proud of you for not being afraid to speak out about such issues, even if you have to deal with them on a daily basis. Dealing with something and not being afraid to mention it is two totally different things, and I am truly proud of you.

K said...

This whole post is soooo moving Rachel - it just made me cry
What is so interesting is that your mum faced some of the same questions that mums of auties face though the stiuations are so different
Hugs and I think you are right
Your son is so lucky to have you as his mama - your last line is so moving and so inspiring

K said...

You know there is an author called ELizabeth George - and in her book "For the sake of Elena " - In this book I first learned about the big divide- Read this page - the character talks about the people who are Deaf and those who are deaf -it was so interesting - I found the page online and copied and pasted the long link for you
http://books.google.com/books?id=aZBw8kYM5T0C&pg=PA217&lpg=PA217&dq=Elizabeth+George+Deaf&source=bl&ots=s1qhuGQ0Gz&sig=5ULtNNUwJ68PQTmG_hZxk03qQGM&hl=en&ei=qvmoSuqdN8aTtge23umgCA&sa=X&oi=book_result&ct=result&resnum=1#v=onepage&q=&f=false

Foursons said...

I love getting your perspective on things I never even knew to ask. I think it's admirable that you don't use your "disability" as a crutch. Jakob has been diagnosed with Asperger's but I have yet to tell him. I expect the same behaviors from him that I expect from my other kids. Yes, he has some quirks that I make allowances for, but the diagnosis is never an excuse for anything.

Kameron said...

I don't understand why the deaf community would encourage people to separate themselves from society. I think it would put you at a disadvantage to only know sign language and not be able to communicate with people.

It's not like you are embarassed of being deaf, you just make the best of your situation and press on with your life as normal. I commend you for being so vigilent. It is hard to overcome obstacles, but you don't give in and just settle into the paradigm.

momof3darlings said...

UGH you made me cry! :( You are beautiful and a total treasure. You just keep those labels, drop whatever else you don't want to carry.

I think it IS a personal blog and one that makes me happy, even when I'm too busy and crazy to comment. Every post is always read, usually with laughter or tears, but always with a knowing I have a friend out there trying to make it in this scary world too.

Gosh, I heart you. And your hearing husband. And that beautiful, scared-of-moth-sounds son of yours. :)

Eyeglasses & Endzones said...

Rachel,
I love what you wrote about this. And I agree with you totally. I also feel like this is YOUR blog and you should post when and what you feel necessary. I commend you for doing all of things that you do. And here is a really interesting thing. When you type...we don't know that your deaf!! I follow Keri but I am off to check out the other girls.

LOVE LOVE LOVE this post. Awesome job!

Kmama said...

Kudos to you for making the best decision for YOU.

Great post.

shmode said...

What an impressive post, it truly is Rachel. I can't imagine anyone putting it as eloquently as you did.

Every part of any culture has a boxlike structure. Even those in Christianity fall into that rut and force their (our) expectations upon another about what 'should' be going on. Brava for not giving into the pressure, but still brava for those who do, because as you said, "The only clear answer is that NONE of them are the answer for EVERYONE".

Cheffie-Mom said...

Hi, I'm Debbie. I came over from Sandra's blog. Congrats on the award! Your blog header is wonderful!

Emily said...

What a really great post. I always appreciate your fresh, encouraging, and wonderful perspective...and the honestly that always accompanies it!

Killlashandra said...

Something tells me I've missed something in my blogging lapse. I'm kinda of at a loss as I'm leaving work in a few minute for an off site meeting and that's probably not enough time to digest your comments. I'm not sure where the focus on your being deaf suddenly came from. I've always felt you share the most wonderful stories good, bad, in between. You have such a wonderful sense of humor about life. Hmmm... I'll have to dig through your posts soon.

Tomorrow I'm going to post about horse teeth. I totally thought of you when I wrote it. ;)

Together We Save said...

Great post!! You are awesome.

hannah m said...

I'm so thankful for your perspective, Rachel. It means so much to me as the mother of a child who is hard of hearing...as I navigate these choices for our daughter. Thank you.

Pam D said...

Hmm. I realize that people naturally tend to gravitate to those who are most like themselves, be it in race, religion, or gender (went to a meeting Thurs. night, and we sat in the cafeteria at long tables. Guys were at one, ladies at the other, by choice). But to deliberately segregate yourself completely does seem to take away so much of the "flavor" of life; I think you would be a mere shadow of the vibrant, funny, beautiful woman that you are if that had happened to you. Certainly, you need to make choices for your blog, your child, your marriage, and your life based on what YOU want, not what a "group" SAYS that you should want. You are beautiful, and a dear friend... you add SO much to the blog world and I imagine to the real world, too. I'm glad that you don't let someone else definte who you should be.. well, other than The One who made you. HE has the right to do that, and only Him.
Love you like a sister...

Pam D said...

(of course, that should read "define who you should be".. darn arthritic fingers...lol!)

melody is slurping life said...

Rach, I am standing and applauding.

Deafness is one disability with which our family does not deal, however, we do deal with "invisible" disabilities which cause our sons to be unfairly judged, ridiculed and excluded. We as their parents are often treated the same. Their "issues" and behaviors are often deemed our fault as a result of bad parenting.

Nonetheless, we will continue to live our lives as God and our hearts lead. And we will forgive those who just don't get it...because God loves each of us equally.

No one truly knows with what another must deal. It's why I judge no one, ever.

Thank you for your words of support and for including the words in your last paragraph...

"...what their children are doing for them."

It's why I choose the terms "special purposes" over "special needs". Need indicates only taking and my children give far more than they take.

Love you guys bunches.

P.S. Your parents clearly made the right choices.

melody is slurping life said...

P.S.S.

I apologize for the above novel.

Melissa said...

You are an amazing momma, wife and bloggy friend. This is your space...I love to read your heart!

K said...

Ra- chel if you have a minute you gotta read Hopeful Parents today - I commented and copied and pasted the link to the this post!

Hetha said...

I really enjoyed this eye-opening post! I guess you know from what I wrote over at Hopeful Parents that I'm with you 100% on this stuff. It just simply takes my breath away that humans spend so much time tearing each other down. So incredibly sad and pointless. But this was anything but, I'm moved and inspired to be sure. Thanks Rachel!