Sunday, March 30, 2014

Shooting our wounded *updated*

 

 

Y’all… CHICKS ON THE RIGHT picked this up.

 

And linked to my little ol’ blog.

 

Let’s be honest here… first I was like:

baptism

 

And then there was a fair amount of screaming.  My husband may now be considered legally deaf.

 

 

Because I knew they were going to share from a hearing person’s perspective… just how offensive that article was to so many people who are doing nothing wrong by celebrating a joyous part of someone’s journey.

 

But even better than that?  The Chicks followed up with some really terrific news about Joanne Milne, the woman who heard for the first time after her cochlear implant was activated.

 


A glaring fact that the first article’s author omitted, was that Ms. Milne has Ushers Syndrome.  I have several deaf friends with Ushers – a cruel disease that takes both sight and hearing.

Ms. Milne is in a race against time to preserve what independence she can  - as a legally blind person who is losing her hearing.  Many Deaf community members might claim that their hearing loss is part of their culture (it is), but I doubt many of them would be willing to spend their lives in complete darkness and silence if there were something they could do to maintain more contact with the world around them.

 

And before any accuse me of assuming deaf-blind persons cannot be independent and productive members of society, I’ll share that I have two deaf-blind aunts who live independently and retired after years of working for BOEING.

 

Y’all, your plane parts were put together by incredibly talented deaf and blind people.  They have earned every bit of pride they have in themselves.

 

See, that was a whole bunch I’ve never shared here before.  Which makes it really silly for someone to make blanket statements about people watching happy videos, right?

 


Now, I’ll send you off to the Chicks on the Right perspective, while I go scream some more :)

 

~

 



I don’t share this often.

 

Because the fallout is brutal.

 

I’ve been asked to write about deafness for big name websites… social media brands you’d recognize.  I turned them down, knowing that the backlash I’ve experienced in my own life would only be compounded by exposure to the anonymity of ugly online opinions.

 

I doubled down on ensuring anything related to our blog or Facebook or Twitter or Google+ or… a myriad of other sources would be as drama-free as possible.

 

 

Because frankly, I care about YOU.  The readers who have been with us for 7+ years.  Who supported us through infertility, cancer, losing mom.  Who laughed with us about squirrels and elbutts and shopping with toddlers.

Because you knew us as Mr. Daddy, Rachel, and Itty Bit.  And Rachel just happens to be deaf.

 

I feel like you would hear my heart because I’ve never claimed to be perfect.  And in sharing it now, I realize that this opens up this community to those aforementioned opinions from others. 

 

The irony is that most hostility is likely to come via social media other than here… since you guys have made this such a place of support. 

 

 

Here is what I wanted to share:  being deaf comes with an incredible myriad of choices for how to communicate with the world.  There are some who chose to communicate primarily through American Sign Language (ASL), others who use different sign languages, others who learn to lipread and to speak, still others who use written messages, some who receive cochlear implants, some who use hearing aids, and some who will use countless combinations of these.

 

There is a community that makes a distinction between being deaf and being Deaf.  The capital-D Deaf signifies that for the majority of these persons, they rely on ASL and many believe that hearing aids or cochlear implants are an unnecessary attempt by the hearing world to “fix” us.


This was the purported viewpoint of a woman with deaf parents who authored this article:

 

cochlear implant

 

She wants you guys to stop sharing those videos, y’all.

 

Because she doesn’t want people thinking that deaf people need to be fixed or that cochlear implants are a fix.


Nevermind that the people in the videos have chosen to share a part of their lives.  A moment that undoubtedly had much emotional investment because they’ve made such a personal decision to do something in order to help them toward a goal they are pursuing.


And frankly?  I am not going to be shamed out of celebrating with them.  I won’t shame you guys for not expecting the video to be a full documentary of everything that led a person to this decision, and everything that they’ll face afterward.

The author paints every viewer as a person uneducated about hardships these people may face.  But to a person… (life is pretty consistent this way) every single life is filled with UNIQUE hardships.

 

 

It’s just like I’ll celebrate with the mother holding a newborn… whether I know that her son was after seven hopeless years of infertility, whether that baby is her newly adopted daughter, whether he has down syndrome, whether she’ll have autism, and whether I know how any of their lives turn out in the grand struggle and delight of life.  Because ohmygosh, she’s HAPPY and radiant and joyful and excited and breathless with what she is going to do in the world.

 

I am just so incredibly frustrated by the author’s response to these beautiful moments that people are sharing.  Not that she’s attacking the persons choosing to get the cochlear implants (oh, but she is… can’t you feel it?), but that she’s attacking YOU.  For spending the moment happy with someone.

 

She calls it “maudlin”.

I looked it up just to see how officially insulting it was.

showing or expressing too much emotion especially in a foolish or annoying way, drunk enough to be emotionally silly, weakly and effusively sentimental - - Merriam Webster


Is that what you got out of this video?

 

 

 

Or this one?

 

 

 

Or this one?

 

 

 


Ever had something to celebrate?  And noticed that killjoy who refused to join?  I won’t be that person.  I am so saddened that this is another example of the Deaf community shooting their wounded. 

 

Rejoice with those who rejoice.
 Romans 12:15

 

 

Ironically, the author acknowledges that some who receive cochlear implants “no longer feel welcome in the Deaf community”. 

 

NO REALLY?



Let’s all consider: you make a monumental decision, share it with your community, and not only do they not support you, but they attempt to shame others who would.

So if the author’s goal was “education”… that you could learn all kinds of new things about the Deaf community and how to interact with them and be part of what makes them unique – I’d be grateful if you’d take in part of my story – a hard-earned education.

 

 

I was three years old when my mother noticed me shifting the phone to my other ear when talking to my grandmother.

1rachmikey1978

 

On my fourth birthday, I suddenly lost the rest of my hearing and became profoundly deaf.

scan0004_thumb[2]

 

The audiologist who fit me with my first pair of hearing aids was detached, perfunctory, brusque.

Until I began kicking my heels on the chair legs.  And realizing that sound, in some form, had returned.

As I belted through “I’ve Been Working On the Railroad” and “Oh Susannah”, the audiologist’s attitude completely changed.

 

Surgery was a heartrending decision for my mother.  One that helped reclaim some of my hearing.surgery

 

But over the years, my hearing continued to fluctuate, and today, I am more profoundly deaf than the average deaf person you meet.

 

Years of interactions with the hearing world, speech therapy, lipreading practice, being fluent in sign language – all helped me communicate.

 

I used this for the good I felt I could do.  My mother’s frequent explanation that “people just don’t know”… encouraging me toward trying to build bridges between people of different abilities.

 

Rach pageant2

 

pageant2

bill signing1

 

And as I started the one year “speaking” tour as the scholarship pageant winner, I was accosted by countless comments of

 

You’re not REALLY deaf because you can speak.

You’re not REALLY deaf because you wear hearing aids.

 

 

In a story I rarely share, I was reprimanded by a pageant official because I attempted to help a deaf contestant understand that a restaurant waiter was asking if she wanted soup or salad.

 

And years later, this type of discriminatory commentary still happens.  Ironically, Deaf against deaf.  Incredible amounts of hostility.

 

Much of this vitriol was aimed at my mother, who was accused of “forcing” me into the hearing world.

It grieves me more now that I’m a mother and I’ve experienced the bewildering vastness of parenting decisions… any one of which is easy to imagine will screw up your child for life.

 

Can you imagine.  Your three-year old who loves cartoons and loves to sing and talks non-stop all the ever-loving day… telling her not to use her voice.  She can only sign – a language she doesn’t know.  No hearing aids to try to give her some semblance of what she has been used to for three years.  The deafness is dizzying… literally.  Yet you cannot continue to speak with her and must only use a brand new sign language to communicate with a very confused child.  Or you must send her away to a state-run deaf school so she can be with others of her “own kind”.  Your three-year old.  That was the Capital-D Deaf community’s militant opinion.

 

I choose that she did the loving and compassionate and brave thing. 

She refused to let go of me.

Gave me every single tool she could.
Signed with me constantly, and sang with me constantly.
And never let me use my deafness as an excuse (except in Marco Polo).



And this article… means to demean her for thinking she could “fix” me.  To demean you for celebrating someone who makes a hard decision.

 

I’m choosing not to shoot our wounded.

 


And I’m so glad that you’re willing to really hear me.

 

 

IMG_6621

 

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15 comments:

Tamar SB said...

Oh Rachel. This spoke to me in so many ways. I may not be deaf, but my hearing impairment lead me to the Deaf world and opened it up for me. I sign, lip read, and talk in a random combination of the 3. Just yesterday I ran into an old friend - his older sister is deaf and they were our first signing family-friends. We were signing at each other across the event and it felt so good to use that part of my life.

I too am torn about the CI/Hearing-aides (the latter which I have). Everyone has their own opinions and you are SO right - arguing/debating/making people feel bad over their choice is NOT ok.

I do believe that it is crucial to be true to yourself, know who you are, and make decisions that support who you are. As someone who took some time to learn who I am in the HoH world, this is crucial to me!

HUGS!

Stacy said...

Thank you for sharing your story, and I so agree with you on this. What is wrong with celebrating the happy? I feel so bad for this girl that she is receiving such vitriol for sharing her joy.

Daddy Hawk said...

Rachel, your comments apply across far more communities than just the deaf community. Take out the labels and look at the message. Don't be militant. Give people ever tool available they can use. Acceptance instead of shunning. Encouragement instead of discouraging. In short, live the Golden Rule.

Bethany said...

I'm grateful for you! You have taught me so much in the short time I've followed your blog. I never would have known the struggle that comes along with these choices. I'll pray for continued strength and wisdom as you educate with great grace.

Furry Bottoms said...

Amen, Rachel. I understand the controversy you speak of.

I got the cochlear implant. Was it a fix? No. Did it help me hear more? Well yes, I heard more but I had no understanding of what I was hearing, so no, it didn't really help. It confused me even more to the point that I decided to stop wearing it. I couldn't stand it.

I agree, those who are deaf... who are against trying different things to better themselves... I don't know what to say to them. They think you're trying to be somebody you're not. I don't see it that way, but I can understand their perspective. I just happen to live a different life than theirs so my choices are different.

My choices are mine. My family was curious. We wanted to give it a try. It bombed. Okay. Moving on...

I'd like to point these things out to a deaf person who gets surgery for bigger boobs, nose jobs, etc etc. THEY are trying to be somebody they're not? No? Okay. But I won't berate them. It's their choice for their lifestyle.

If it is something someone is excited about, who cares about what everybody else thinks? That individual is so very excited about this event, the moment is hers... the moment is significant to her. Celebrate with her. Because she had the guts to try.

I've been told repeatedly that I could NOT be deaf. Even when I was in a hospital setting as a solo deaf person full of hearing people my age, trying to communicate with everyone, someone on staff said I was faking it. Can you imagine the fury that came over me? I totally went off. I was just trying to survive in a hearing world, that's all. Don't tell me who I am.

By the way, Rachel... I bet I am deafer than you!! :-P Want to compare audiology charts? (Just kidding)

The Man from Bear River said...

I applaud your courage. We need more folks like you and me, and online, many do not understand our passion for sanity and spot on correlations, validations and sound arguments. Then we are cast with the Audism labels. Just disgusting. Know that I will always be with you and likeminded folks on this stuff. I commented on the brain dead LIlit's article. So you can see about 3 out 4 post are dissing her for her treachery. I would like to ask her who is "more" deaf - Lilit or Don or Rachel? She is nothing more than a social recruit to the cause. She still has to experience everything vicariously. She does not eat the dog meat, except as a choice. We have to eat the dog meat of this deafened sojourn.

The Man from Bear River said...

Last post from Don Liveley

Danielle said...

I say, the more tools you give your child to overcome anything they might encounter, the better! Why would someone not want everything for their child?? No one should ever judge someone for doing all they could to make themselves or their child as successful as they possibly can. I get being PROUD of who you are, but you can still do that on top of making yourself the best YOU that you can be!

You're amazing Rachel! We're all rooting for you! And I will join you in rejoicing for people that are doing things to make themselves and those around them, happy!

Judy SheldonWalker said...

We all arrive differently.Far be it from any of us to dictate how. You be you, and a lovely you, you are!!

Discovery School at First Baptist Heath said...

Well said dear friend....and i guess what ever community you "live in" someone is always waiting to tear you down... We all it the crab and bucket theory.. You go crabbing and throw your catch in a bucket.. they try to climb out.. but the one that is closest to the top will be pulled back by the others.

A MilShelb Mom said...

I've followed your blog for a long time, but never responded to a post. Your post brought tears to my eyes. Well said, blog friend!
~Maggie

Peggi said...

I have never understood why people get upset when parents want to teach there deaf children to speak and lipread etc. I figure teach them as many communication skills as possible, not to make them "normal", but to make communicating easier.

My nephew is deaf and went to one of the deaf schools. When my sister in law wanted them to teach him to speak they told her it was a waste of time because he was too stupid. Oh my goodness! Makes me so mad! He is not studid. He taught himself to lip read. When he had his hearing tested to see if he qualifies for Cochlear implants they said he didn't qualify because he had to much hearing. They later realized that he had been lip reading during the test and his hearing was really bad.

Sorry for rambling. Thanks for posting this, you are amazing.

Floortime Lite Mama said...

Reading your post through tears
People are SUCH idiots sometime
you are amazing - more power to you

Lexie Loo, Lily, Liam, and Dylan Too! said...

Thank you for sharing this. I experienced something similar with Liam. Someone kindly asked me to stop sharing updates about him on a board because some of these kids aren't as lucky as him. As much as I can empathize, it's not fair for me to keep my mouth shut about how he's doing. I think those videos are absolutely beautiful and should be shared. I love your words, my friend.

Herding Grasshoppers said...

Amen! My son (15) just received his second CI in May. He was born with more hearing, and gradually lost it all. While we've kept him exposed to sign language and the deaf community, he has always wanted to be oral. Why would anyone condemn him for wanting to be part of the world he was born into?

I started taking sign classes after we realized he had hearing loss. I would work to become fluent if that was HIS choice. But it isn't

He's doing WONDERFULLY with his CI's. He even called and talked to me on the phone last week, which he could never do with his HAs. Go TATE!

Julie G