Monday, April 14, 2014

Guest post by Stacey Calcano: "An Open Letter to Author John Green On His Perpetuation of The Use of the R-word"

  • Dear Mr. Green,
  • I’ve just finished reading “An Abundance of Katherines” and have previously read: “The Fault in Our Stars,” “Looking for Alaska,” and “Will Grayson, Will Grayson.” As a woman of 40+ plus I have probably read more of your books than many of my peers. My oldest daughter, who is 17, and her friends are huge fans of your work and I read the above-listed books at her suggestion. I must admit that I have enjoyed your writing style, your penchant for weaving characters together, your ability to keep the reader interested throughout and your sense of humor.
  • Sadly, there is a part of your writing that I have not enjoyed….your repeated use of the word “retarded” and its many iterations as a slur. My youngest son, who is 2 years old, was born with Down syndrome. He was born into a world where many people think he should never have been born, where people think it’s okay to ridicule him simply because he has an extra chromosome. They judge him and the person he will become, before they’ve even laid eyes on him. Now, I’m sure you did not mean your use of the R-word as an insult or a slur towards my son, or those like him. I’m sure your intent was not to offend, but to use vernacular that is widely used by your reader base. What you may not realize, is that your use of the word reinforces the negative connotation and normalizes its use amongst teenagers. When these types of slurs are accepted they enable disenfranchisement on a very large scale. What I didn’t notice in your writing was the use of other slurs. Slurs such as the N-word, gay, homo, fag, the list could go on and on of words that were once widely used and with impunity in our society. These words were often used in order to garner a cheap laugh at the expense of others. As African American and LGBT rights have flourished, the use of these words became less and less acceptable. People began to realize that words have the ability to target and diminish and entire population of people. In today’s world, people with cognitive disabilities and their families and advocates are asking society to stop using the word “retarded” and all of its many mutations for the exact same reasons. It demoralizes and diminishes an entire population of people, sight unseen. At a minimum, I do hope that you will reconsider your use of the word in future writings. It would also be amazing if you would take a vocal stand against the use of the word and join the “Spread the Word, to end the Word” campaign. Just think of the impact you could have. http://r-word.org/

Respectfully, Stacey Calcano (mother of 4, ages 2 to 17)

Processing...

When most people see the word processing, they most likely think of what a computer does.  It transforms information into readable text, pictures, kitty cat memes, etc.  It processes computer jibberish into a medium that our brain recognizes, quickly.

What I want to talk about is the way people interpret information.  Specifically, how me and my youngest son see and hear things.

When I was a child, before I began school, I was a genius.  I read whole books way before I entered Kindergarten.  I had a grasp of the English language that probably rivaled that of an average ten or twelve year old when I was five and my use of sarcasm and humor made adults weep with glee.

It was universally accepted (okay, my mom WAS my universe when I was five) that I would get straight A's all through my school years, that I would graduate from Princeton and become a successful brain surgeon/astrophysicist, or at the very least, a writer that used correct grammar.

It didn't turn out that way; far from it, in fact.

By the time I hit second grade, I was already "not working up to my potential".  I fidgeted.  I lost my homework.  I didn't DO my homework.  My desk and bookbag were overflowing with crap and my mother and my teacher were both shaking their heads (at best) and screaming (at worst) at me over my laziness.

"If you would only APPLY yourself!"

If I had a nickel for every time I heard that throughout my school years, I'd at least have a couple, two, t'ree bucks.


I carried on believing that I had just been a lazy student until I had my own children and I started seeing my struggles in theirs; especially, in my youngest son's.

Like me, he talked and read very early.  My mom often recounts a story of E, sitting on her lap, at about eighteen months old, reading her Scrabble letters out loud while we played.  He was and is a very bright boy.

Within the first few months of Kindergarten, we realized that he was having trouble, though.  It turns out, this trouble had a name:  Processing Disorder.

There are three basic types of processing disorders:  Auditory, Visual and Sensory.  Sound, Sight and Touch/Feel or Tactile.

E and I both have trouble with the way we interpret what we read.  Often, our brains are on the next paragraph, while our eyes are still on the one before.  It leads to confusion.

We are also not very good at following spoken directions, which is part of the reason for my doing so poorly in school, when nearly every class relied on lots of talking by the teacher and lots of note taking by the students.  I would invariably get lost at some point, quit trying to figure out what I was supposed to be writing and would start daydreaming and doodling.

When the time came to turn in the homework that was assigned during the drone, I would usually have missed it, taking the parking break off the steamroller at the top of the hill of crap that was my missed assignments.

In classes that I had a good grasp of:  History or English, I could usually make it up and get by; but math, especially Algebra, was another story.  If I missed one thing, I was lost for days and weeks, often never to get back on top of things.  It didn't help that my Algebra teacher was the same one for three years in a row and that she was a psychotic, polyester pantsuit wearing, drunk.  I was afraid to approach her for help and when I did, she repeated the tired old line about being lazy and not applying myself, instead of understanding that I was having trouble.  Needless to say, I didn't ask for her help very often, except under threat of bodily harm or house arrest carried out by my mother.

I was grounded for approximately 742 days of my high school career.

So, when I got an email from my youngest's teacher about some writing assignments he had missed, I responded quickly that I would talk to him about it and we would get things straightened out as soon as possible.  Only, I read it wrong...

And mixed up the assignments she was talking about...

And confused the whole situation further...

And had to ask her for more time, because I had made things worse...

And it hit me that as much as I have learned to compensate for my struggles with processing, it is a lifelong challenge.

I have to remind myself to slow down, to re-read, to clarify things that I am not quite sure about.

And sometimes, I forget.

And I think of all the times that I have felt totally lost, when it seemed everyone around me knew what they were doing, even now, still, today.

When everyone else brings the paperwork to the meeting and is on time; I wonder why it is so hard for me.  Why am I such a scatterbrain?

And I look at my kid's desk and backpack and have a flashback of my own.

And I feel for my kid.

And I am thankful that I "get" it.  

And I hope I can help him.

And I think that he will probably always struggle, as I have.  

And then, the ray of light:  I have a life.  I have held on to jobs.  I have made something of myself, though it is miles short of the goals I have set.  I have SURVIVED.

He will, too.





Tuesday, March 18, 2014

Not Quite Ready for Acceptance

Still angry
trying not to let it
poison me

I wish you would 
just listen

Hear my pain

Maybe it would 
get better
go away

If you would just listen

I could tell you how I feel

I might yell, cry, scream

but it would be out 
in the air
instead of wasting me away

The truth is never the enemy

Lies kill and truth saves

I can't pretend to be okay

I can't pretend nothing is wrong

I can't

I just can't

Monday, March 17, 2014

Anger

Wanted
Coddled
Sheltered
at the expense of the rest

Should have called
done 
something
different

I am different, too

Stronger
capable
able to take it

Fuck your sadness
Fuck your misplaced anger
Fuck your blinders

Made my mountains into molehills
my beauty into bleakness

Where is the heart?

I'm ringing and it's not
home

Wednesday, February 19, 2014

Who Needs Rules?

My son, Charles has no use for arbitrary rules.  Real rules, like safety-type rules, he is mostly down with.  At least, the ones he agrees with.  The fact that he cannot drive a car because he:  

a)  is too young to get a license
b)  is unable to pass the written test
and 
c)  has 20/375 vision

does not sit well with him.  If there is a way to get a license, then, by god, he will get one with his will.

Thankfully, I have another year or so to cross that bridge (and maybe move to Wyoming, where his driving probably won't kill anyone).

Anyway, back to Mom's Arbitrary Rules and the reason for this post. We have the same fight, every day over what shelf the acne treatment pads should go on.

I know.  It sounds silly even as I type it.

Here's the thing, though.  IT DRIVES ME CRAZY!  I have them put away, neatly, on the lower shelf behind the cabinet door.  Invariably, the next time I go into the bathroom, they are on the top of the cabinet.  Every time.

My house is not haunted.

I don't have little demons moving things around, trying to freak me out.  Even if I did, I would hope they would do something a bit more interesting than move Charles' acne medicine.

No, this is Charles telling me exactly what he thinks of my stupid rules.  Because, really?  Is anyone going to die if the stupid acne pads are on top of the cabinet?  No.  Mom is just going to go a little bit crazier.  And isn't that the end game?  Making mom crazier?  Because crazy mom is HILARIOUS!

I used to think so, but now I am not so sure.

I think after awhile, after so many years of people telling you that your shoes go on the other feet, that the dirty plates go on the right side of the sink AFTER THEY ARE RINSED, that you CANNOT DRIVE MOM'S CAR, you kind of need to rebel a little.

I want my kid to buck the system.  True, that he is bucking MY system kind of makes me nuts, but do I really want a kid that is going to just follow along with any old thing any random person "in authority" says?  

No.

I want my kid to push back against those who will tell him what he can and cannot do without giving him the why.  Because some of those whys are arbitrary.  

"It's the way things are done"  is arbitrary.  It's also a cop out.

So, buck that system, my Charles.  I'll be right behind you, with bail money if need be.



Friday, February 14, 2014

Okay, Denmark...You've Got My Attention

I once spent the day in Denmark.  Well, I guess it was two days, one day coming and one day going.  I was trying to get from Helsinki to Lausanne, Switzerland and I had to take a bunch of boats and trains.  It was a long time ago, so excuse the sketchy details.  The only thing that I really remember is being pretty well broke by the time I got to Switzerland.  I ate a lot of leftover bread on that trip.  Ah, youth!

Anyway, Denmark has been on my mind, lately.  Even before the news of the unfortunate giraffe, Marius, reached me, I had been thinking about what kind of society they had there.  Sure, it is a happy society (see this survey) and maybe that is part of what scares me about it.  As soon as I heard about Marius I (for now it appears there is a Marius II; note to self:  Don't be a giraffe named Marius in Denmark), my mind went to thoughts of the Down syndrome population in that country.  In Denmark, like most Western countries, Down syndrome births are dwindling (check this out).

I don't want to get into the whole subject with much depth here, mostly because I don't want this post to go on for days.  Suffice it to say that I have a problem with people thinking that this is a great thing.  It really bothers me that some people think it's a great thing; mostly, because I have a son and friends and other people I care about that have Down syndrome and I think a world without them would be decidedly more...shitty.

So, I just kind of wonder what kind of great society promotes the killing off of those who are seen as unneeded or unwanted or less-than?  

What does it say, when a zoo helps to create, names, raises and then decides to kill a young giraffe...oh, and cut it up in front of cameras for the kids to watch.  Good times!  But, seriously, what does this say about what life means to these people?  Life is good only if it directly benefits (read:  makes money for) others?  Life is only good if you are born the right height/weight/sex/color/creed/national origin/sexual orientation/with the right number of chromosomes?  

What did this giraffe do to deserve to be fed to the lions he shared the zoo with?  

I've read some of the comments about the subject and many say things along the lines of "giraffes are lions natural prey, anyway" and "you would just have to kill a cow instead, so what is the difference?".  I can kind of see where they are coming from.  After all, a cow's life is as important to that cow as Marius' life is/was to him; but there is something about breeding this animal, wanting him until he was deemed unnecessary, then killing him that is deeply disturbing.  And it reminds me of the free, prenatal screening for T-21 that Denmark offers.  And it feels icky.  And I get that a giraffe is not a person.  It still feels icky.

If you don't love a person with Down syndrome, maybe you don't understand what I am saying.  Maybe you think I am crazy.  Maybe YOU think it's a great thing to eliminate Down syndrome and with it, part of what makes my kid MY KID.  I would ask you to keep an open mind, though and hear me out to the end.  

Do you know someone with Autism (prenatal test)?  Do you know someone who is gay?  Because guess what?  With all the genome testing that is going on, prenatal tests are coming for those conditions as well, all in the name of "advancing human health".  What does it mean for us as human beings to chose to eliminate traits that are a natural part of the human condition; not diseases, not conditions incompatible with life, but traits that could be seen as less than desirable?

And even if diseases like cancer and heart disease and schizophrenia could be diagnosed before birth, what would we do about it?  Since just about everyone will get one or the other at some point in their lives, COULD we do anything about it?  What if you found out at age twenty that sometime before you turned fifty you would have a massive heart attack?  It's quite likely, actually; much more likely than being born with Trisomy 21.  Would you want to be shot in the head to spare you the misery?  Or would you want to fight for your life?  

Human beings are beautiful because of their differences from one another.  One race, hair color, orientation or neurology is not necessarily better than another.  Should we, who have apparently "won" the neurological lottery, have control over the fate of those who haven't?  And if so, are we conducting our own, decidedly less messy, though no less troubling, form of Aktion T-4?  

I worry about where we are headed.  I worry that we don't learn our history lessons.  I worry that in our quest to become "better", we will wind up bereft. 



Wednesday, February 5, 2014

Sentimental Me

Maybe it's foolish.  I've been called worse things.  

It's easy to become sentimental as you get older, but I was born that way.  From as far back as I can remember, I saved little things.  I had a terrible time parting with anything someone I loved gave me, whether it was a plastic ring from a gumball machine or a stuffed animal or a birthday card.  

When my Mom, or grandma, or grandpa would kiss my cheek, I would be careful not to rub it and could feel it, lingering there, for a long time afterwards.  

The one and only year I went to camp, the girls in my cabin were mean and clique-y.  Though I felt a bit lonely, the fact that they weren't nice to me didn't bother me as much as the fact that they wrecked the bed that my mom so nicely made for me before she left.  All those thoughtful, tight tucks, undone in a fit of eleven year old menace.  

If you look in my purse, I know you will find at least one old shopping list written by my Mom and a note about my worn out tires from my Dad.  In the kitchen drawer, notes from my Dear Husband about slippery roads, hot coffee and cats.  On the top shelf of the closet, nearly every drawing, project and card ever made by my children and birthday cards from relatives dating back to the 70's.

My father's mother passed away last April, but her voice is still on my answering machine.  I'd still have my other grandmother's voice as well, but her last message to me got erased.  Believe me when I say it really bothers me that it's gone.  I also had my youngest son's voice on there, from the day he first rode his bike (alone!) to a friend's house.  He called as soon as he got there.  "Hi Mom.  Well, I just wanted to call and say that I made it and I'm fine.  Well, see you later.".  You see, I have it memorized, even though it too got erased when we had to get a new phone.  

Books and clothes and televisions and cars and other things, I have no problem giving away.  I don't get attached to big things; not really.  I'd rather someone else have them, if they can be useful to them.  Over the years, I've managed to pare down the sky high pile of letters and cards to a more manageable amount, as well.  Now, instead of every birthday card my great grandmother ever sent me, I only have one; but I won't part with it.  

I still have my favorite childhood stuffed animals and every silly letter my husband wrote to me when we were apart for four months the year we got engaged.

I worry that I haven't taken enough pictures, spent enough time, taught my children all the things they need to know from their mom.  I worry that they'll grow up and leave and I worry that they won't.

I want to take all these things; the papers, the pictures, the voices and the worries and lock them away in a time capsule.  I want to cement them into the cornerstone of my life; knowing that these things are only a small representation of what really matters.

Here and now, what I have shared, what I remember, who I have loved, who knows that I love them; those are the real things worth keeping.