Sunday, April 22, 2012

the disability truth

 

You’ve come a long way with me.

 

You know that I’m profoundly deaf, often silly, and unfailingly clumsy.

You might also know that I lipread and I speak clearly.

 

This puts me in a rare category that many do not know how to handle.

Do I just talk directly at her?

Do I get a pen a notepad?

Do I raise my voice?

Do I whisper and mime?

 

I stood behind an elderly man in a checkout line.  The teenaged employee repeated himself with much impatience.  Eye-rolling.  Exaggerated sighs.

He completed his purchase and I stepped forward.

“UGH.  Those deaf people!  ‘What?  What?  What?’”

 

The polite smile froze on my face.  I felt my cheeks turn hot and forced myself to pay for my groceries without punching him in the throat.

I brushed my bangs out of my face and tucked them behind my hearing aid. I nudged my ear slightly and watched his eyes jerk suddenly toward the squeal.  I refused to look away as it registered across his face.

I took my receipt and said “thank you”, in a voice that carried a trace of a deaf accent.

 

 

And I’ve wondered for 15 years if that ever made a difference to him.

He couldn’t have known that I was the current winner of a state Deaf pageant on my way to the National Deaf pageant.  That I was so profoundly deaf that my audiology tests showed hearing loss worse than the deaf person who didn’t speak or read lips.

 

He couldn’t have known that the flush-cheeked 20-year old in front of him was hardly different than the elderly man shuffling out the door.

 

Rach pageant2

 

~

 

I spent two years on a speaking tour circuit.  The pageant system raised money for scholarships and I worked for a highly regarded law enforcement agency while finishing my college degree.

The public speaking terrified me, I quickly learned that I preferred interacting with school assembly children.  They believed they could do anything.  It was their parents and deaf adults that scared me.

 

Here’s the part of the post that will earn me some instant enemies and cement why I refuse requests to write for deaf websites.  What shocked me most about these encounters was the prevailing belief:

disability

 

The #1 question I was asked repeatedly? 

“How much money do you get monthly from SSI?”

 

They found no shame assuming I received state assistance because my ears didn’t work.  No shame assuming that I didn’t have a job.  No shame assuming that my deafness excused me from even having to try.

 

There are certainly people who need this.  Without a doubt.  But what happens if you never try?

 

I was raised by two of the hardest working people I know.  My hearing loss did nothing to dampen their expectations that I would work hard to be the best RACHEL I could.

Not the best Rachel-Cut-Her-Some-Slack-She’s-Deaf.

surgery

 

It is with this gift of parents who didn’t automatically discount my potential based on my disability, that I take a (probably) unpopular stance on this:

 

prom

source

 

 

I hope this comes across as compassionate.  I hope you can understand that this is just my perspective: as a person with a disability, as a daughter, and as a mother.

 

The story continues with the mother saying that her daughter worked hard to try to be elected homecoming queen.  You can read in her reasoning that her daughter deserved it in part because of her disability.

 

No.

Just NO.

 

 

You are not worth more by being a homecoming queen.

As heartwarming at it might sound, you’re not entitled to be something simply by virtue of a disability.

 

I would be cheering along with everyone else had she been selected.  I sat in front of a hotel room tv and screamed happily when Heather Whitestone won Miss America.  I love a “she overcame her disability” story better than anyone.

 

But lets look at the facts:

#1.  You don’t “earn” being homecoming queen.

It’s a popularity contest, pure and simple.

No number of billboard advertisements would have persuaded the majority of a high school campus to vote for someone.

 

#2.  Her worth isn’t based on a vote by high school students.  Her lifetime success won’t be measured by this. 

 

#3.  The homecoming queens I see on Facebook a decade later aren’t necessarily happier.  Real success is having one true friend for high school still on your Friends list.

 

#4.  While I don’t begrudge this mother for wanting a special moment for her daughter – what are you teaching your child when you express disappointment that people did not give her something on the basis of her disability?

We ALL have a disability.  Something that forces us to work harder to do the same thing that someone else might do easier.  Success that is bought with a billboard isn’t her success.

 

#5.  Let’s face it… I’m annoyed that Mom’s way of dealing with her own disappointment is to bring more media attention to it.

When I was in high school, the last thing I wanted is to be identified as THAT DEAF GIRL.  (Guess what?  Classmates on Facebook often only recognize me once I say, “I was that deaf girl in Mr. Booth’s Chem/Phys class”).

I’m sure this girl doesn’t want to be known as THAT GIRL WITH MILD CEREBRAL PALSY WHOSE MOM TRIED TO BUY HER A CROWN.

 

 

Again, please don’t mistake this for being uncompassionate.  I’d be her biggest cheerleader.  This article just left a bad taste in my mouth from the years of answering:

“I don’t receive state assistance.  I work hard at my job.  People are mostly kind about disabilities if you give them a chance”.

 

Let’s encourage our kids to be compassionate, respectful, kind.  Help them to be successful at being a good friend.  Celebrate the good stuff.  Say, “I know you can!” for the hard stuff.

We all need to work hard to be the best someone we can.

 

And if you have a disability?  Use it to do something good.

Don’t waste the hard stuff.  God has a reason for it.

bill signing1

 

You know why blogging is so amazing?  Because y’all help me forget that I actually AM deaf.  I’m a person to you.  And I’m grateful.

 

This is Rachel.  Stepping off my soapbox.

38 comments:

GunDiva said...

You are an amazing, wonderful, fabulous person who is very much loved. And not one whit because of your deafness.

Digger's got a legit disability and *should* be drawing SSI because it inhibits his ability to work, yet he won't file. He'd rather work than sit at home collecting checks he didn't earn with his own two hands. He drags himself to work at the hog farm every day, even when he's recovering from an attack, while his co-workers call in sick because they're hung-over. He *hates* to even admit he even has his horrible disease and God help the person who pities him for it.

Would I have wished for a different life for my son, just like the billboard mom? You betcha! But I would NEVER consider trying to play on someone's sympathy so he could get what he wanted.

Disability does NOT equal entitlement, no matter what people think.

Ooo...you got me on a small soapbox, too. I'll step off now.

Allenspark Lodge said...

I had been following your blog for a month or so before GunDiva told me you Signed Exact English rather than American Sign Language so your posts "sound" perfectly normal.

"Ummm, she's deaf?" was my response.

I love your "Don't waste the hard stuff".

Bill

Mr. Daddy said...

DEAR!!!

I believe it was Marcus Aurelius that once said:

"Your life is what your thoughts make it".

I love your thoughts on this, And I love sharing your Beautiful life:)

As You Wish!!!!

Martha in Anacortes said...

Thank you from the mom of two kids with Down Syndrome. I will not let my kids lean on their diagnosis to get out of anything. "But mom it's too hard!" means we all try harder, think of adaptations or strategies, or just take longer.

Saimi said...

Oh Rachel I do love you! This is a great post and a true reminder what an AMAZING person you and your parents are!

And just so you may not have noticed, that picture of you as a little girl...yeah, looks just like your son!

I guess that's why he's so adorable!

Amy said...

Don't apologize for being on your soapbox! Sometimes it is quite needed!

You are amazing and you are so loved!

You are more than a person to me dear Rachel, you are a friend! A friend that I hope I get to hug around the neck this side of Heaven!

I have had people ask me why I don't go get a handicap parking sticker since I am "legally a midget". Wow, right? Because being short is so horrible that I need to park right up front.... really? People never cease to amaze me. Nor you I assume.

Anonymous said...

luv u my over-achiever, over-comer :)

Mom of M&Ms said...

Well said... and thank you for saying it.. I gues my biggest disability is my big mouth and I tend to rub people the wrong way when I open it....and I am not joking... but my girls are dyslexic and have sensory disorder... even school wants to make it easy for them while not making them learn.. and I take up the slack. it is my job to ensure that they learn,, whatever that takes.. and not to allow the school or society to excuse them from standards...I want the tools to succeed.. I do not want the road paved for them.. They have a difficulty with learning.. it differs from the norm.. they have to work hard.. not be excused from the work...especially when they both also have IQs way aboive normal... I know that schols have benchmarks...but my concern is my childs potential..

Your parents are to be admired.. and they are a role model to me..maybe we should get them a billboard....

Foursons said...

Mr. D's comment...awe!!!! He just tugged at my heartstrings.

And M & M's comment- she's right. Your parents do deserve a billboard and they are definitely worth looking up to and learning from.

For the record- Itty Bitty Rachel eating a popsicle in pigtails is AH-DORABLE. Oh my gosh, I want to pick that baby up and squeeze her.

If more people thought like you think the world would be a better place. Everyone wants something and usually they want it for free. The work ethic of this country has gone south and it scares me to think of what our future will be.

Miss you girly! And not because you're deaf and you know that awesome and fascinating to watch sign-language but because you're you. You're Rachel.

Candance said...

VERY WELL SAID!!! And you won a beauty pageant?!?! You know the SGG is teary eyed right now, don't you?

Stephanie McCall said...

you have such a gift for putting something into words just so perfectly. I read this post and then read it again. you are just awesome.

myletterstoemily said...

beautifully written by a gifted young woman.
we know you as witty, silly, intelligent, and
compassionate.

i'm sorry about that cruel check out worker.
who knows what terrible thing had been
said to him? hurting people hurt people.

you inspire people.

Brandi said...

I love your take on this, Rach. You are so right. I wish that mom could read what you wrote. Bless her heart... it was in the right place, she just went about it the wrong way (also, Killeen, TX used to be my old stomping ground - LOL).

Probably my very favorite picture you post is that picture of Itty in pig tails (hee, hee).

You are an amazing person, girl. I am just in awe of you (and I'd really love it if your parents could counsel me on how to be a good parent... 'cause they for sure got it right). ;)

Naomi said...

I really agree with you on this, if God wills to ever give us a disabled child I hope I can really instill this in him or her!

angel shrout said...

I agree whole heartedly. How many times have I offered to send you DVDs and you have had to remind me that your were deaf. Perhaps it is because my cousin was born deaf mute, his wife was deaf. Doctors told them their disabilities were not a genetic predisposition, they were simply a twist of fate. Yet they had 2 children, both deaf from birth, one a mute like his father. They have owned and run a farm for years. Both have held jobs and when he was unable to work he was forced to draw disability. They were shocked when he turned it down for his children, the state approaching them that they would qualify for life long checks.
Perhaps it is the niece of my uncle whose mom was deaf and so was she. I learned to understand their deaf speaking. I played with her and her sister just like I would anyone else. Because I was never told there was a difference. Though her mother did get disability because in her day they did not have a school for them, without financial assistance, my friend never did. She was a worker from the age of 13 on, like me caring for her mother till her death just a few years ago. I understand and am not offended by your feelings. I think the mom went overboard as well.

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

You are amazing, my friend. Just needed to say that!

Anonymous said...

I don't you...I've read your blog for about a year now, but I'd like to say...I think you're amazing! Don't waste the hard stuff, great advice.

Floortime Lite Mama said...

you are awesome and amazing !!!

Bethany said...

I love this. And I NEEDED this. You have such a gentle grace about the way you post on such sensitive subjects.
Your parents sound so amazing. I'd love to know how they found that balance of pushing and being a soft spot for you. I'm just not sure how to handle that with one of mine that has some struggles.
You are a gift, Rachel. I'm so glad that one day I blog-hopped my over here. Because you are a gift! Your writing, funny stories, heartbreaking moments, and genuine heart are always a blessing. I love getting to "know" you! Can't wait for heaven and a hug. :)

Furry Bottoms said...

I completely, totally, 100%, thoroughly and without a doubt love your last statement of why you think blogging is amazing. Because it reminds you that you're a person to people. I LOVE THAT. That is so how I feel about it too.

I hear you loud and clear on the entitlement crap. I've had situations where people thought I oughta be first or earn this award or that whatever just because I had a disability. I have also had situations where the opposite happened. That "Ignore that deaf girl, I don't know how to handle deaf people I don't want her up on the stage with me, it will be too awkward"

Same with job searches. Sometimes you get the job because you ARE deaf, and they need that minority quota met, or you DON'T get that job because they think its too much work.

Yes, there is a purpose to being deaf. I don't fit the deaf deaf mold, but neither do I fit the hearing/deaf mold. If that makes any sense. I am just me. I don't like crowds. I don't like parties. I have social anxiety, and that is not just because I'm deaf. There are other issues going on too and I get tired of people assuming its because of my disability. Ugh.

Okay, I'm off my soapbox too! :)

I love your writing. You're amazing. Your words are always inspiring.

Emmy said...

Hurray!!! I seriously feel like standing up and applauding you!! So so awesome.
Yes, it is good that the girl's mom supported her but yes- I agree she went too far and cannot/should not use her disability as an excuse to why she deserves it.
That is the same mentality that runs rampant throughout this country now- I deserve it because- I need it because--- rarely followed anymore I worked my butt off.
I was born with heart problems- had open heart surgery when I was 5 years old; my mother never babied me or treated me like I couldn't do things or shouldn't because of my poor fragile heart-- and so now when people see my scar showing out of of the neck of my shirt and ask about it I almost have to stop and think what they are asking about- as it has not defined who I am.
Totally going to stumble and tweet this- this needs to be shared

Lourie said...

Found you through a friend of mmine (Emmy) and I must say, I want to share your words with my daughters.

Stacy said...

So well said, as usual! I never knew you were deaf until you mentioned it the first time, and I was very surprised! You are a great example for other people with disabilities. You worked hard to become a part of society and did not allow yourself to get sidelined because of your disability.

You should know my views on handouts and how everyone these days seem to have their hand out. I read a post on Facebook from some one my age wanting us to sign a petition to forgive all school loans. Um...no. I paid for all my school myself, why can't everyone do that? Start with not choosing the ultra expensive school if you are going to be a teacher. Common sense is gone and entitlement is all the rage these days. :(

Ruby Red Slippers said...

So well said--
:)
Ruby Red Slippers

Beth Zimmerman said...

Beautiful ... and beautifully said! :)

robin said...

Ditto on what Saimi said: "This is a great post and a true reminder what an AMAZING person you and your parents are!"

Here lately, I haven't been censoring what I say, especially when it comes to reprimanding someone when he/she has said something rude, inconsiderate or just plain mean. Just this week, I've said something to a kid (who made a rude comment about a teammate's performance) and a waiter (after I had been served my food and just before I left.) Maybe it's because I'm getting older...or perhaps it's because so many people forget how to use manners and/or believe they're the only important people in their circle of life.

I love your wisdom and integrity. Just love your blog!

Heather Evans said...

Don't waste the hard stuff - AMEN.

You are amazing.

Anonymous said...

Sometimes I forget that you cloned yourself in Itty-bit :) Until, of course I see the pictures again!

Anonymous said...

Was also nice to see the pics of IB & MB - miss her...

Tiffany Bleger said...

Amen! Amen! Amen!

We are walking that fine line with Kat right now - between making sure she gets the help she needs and making sure she is not allowed to get away with murder because she needs the help. It is a balancing act for sure.

And Mr D? Way to go friend, way to go. I sincerely hope that comment earned you some brownie points.

Anonymous said...

Hebrews 12:12-14

12 Therefore, strengthen your feeble arms and weak knees.

13 “Make level paths for your feet,”so that the lame may not be disabled, but rather healed.

Julie said...

This is exactly why I love you.

Jessica {Team Rasler} said...

I bet that kid didn't even recognize a deaf accent when he heard it, but I have to hope that he grew up into a more compassionate human being. It's so odd to me that you've had to answer so many times that you have a job and don't receive state assistance. It wouldn't have even occurred to me to ask that. Then again, I began learning sign, working at a summer camp for Deaf families and children, and going to a Deaf church for the years I was ages 9-14. I was fortunate to have met so many hardworking people who just happened to be Deaf that meeting those who had some other disability was a minority. So. It's all about exposure, isn't it? And that's why it's fabulous that you are blogging and get up on your soapbox when you feel like it. You go, girl.

Kameron said...

First, Itty Bitty (who,by the way is no longer either!) looks just like you!!! My kids are the same way though so it is just funny to see.

I don't ever think about the fact that you are deaf. Sometimes I even forget until you mention something. I love hearing your thoughts on these things. :)

danette said...

Love, love, love this post! I appreciate your perspective and as a mom I totally agree.

NaomiG said...

Aw, I LOVE this post! Beautifully written, and so beautifully said. And so very true.

Annmarie Pipa said...

wow..my 4th grade son is doing a hero project for school...he picked Helen Keller and every night tells us remarkable inspiring stories..
happy Mothers day!

Aunt Crazy said...

I'm trying to do a little blogging catch up and I came upon this. You give your opinion so eloquently and it's so heartfelt. You're absolutetly right that disability does not equal entitlement. I see entitlement issues in so many people, not just the disabled, and it is creating quite the drain on society.

I heart you big time and Candance is so right, the SGG is a little teary cuz you have won a crown and we haven't ;)