Why, Birdman? Why?

The movie Birdman made me long for NYC in the way that so many movies set there, do.  I was warmed by the sticky, Spring air and I smelled it's gritty fragrance in my olfactory memory and felt like I had gone home, though I never did actually live there.  I wanted to, but that's a long story.

There was so much to like about this movie:  Edward Norton and Michael Keaton were impeccable.  The music was fun and silly and loud and perfect.  The story was funny and real and brilliant.

But, 

You could feel that But coming, couldn't you?

There was that word:  Mongoloid.  

It was there and gone so quickly that maybe if you were not me you might have missed it; but it was there, I assure you.  

And I thought "why?".  There were so many other ways to convey the image.  So many other words to choose, but that was the one the writers went with.  I kind of crumbled inside.  It gets really tiring getting punched in the gut again and again.  Here I was, going over the old arguments in my head.  Hearing the voices of those that don't "get it".

"It's just a word"
"We didn't mean it that way"
"They aren't talking about your son"

"It's our right to say this stuff"

That last one gets me.  Effing OF COURSE it's your right to say whatever hurtful, crappy thing that comes out of your mouth.  You have every right to be a jerk.

Of course, I have the right to be hurt.  I have the right to write about it and you have the right to agree with me or dismiss me or ignore me or mock me.

I have thought about whether it might not be a language thing.  The writers are Mexican and English is not their first language.  Maybe the word they were searching for was "retard".  This does not make me feel any better.

Why does anyone need to use a person with Down syndrome as the butt of a joke?  Or even worse, as a throwaway observation in an otherwise really great movie?

There are bigger fish to fry.  I understand this.  I CARE about those bigger fish.  This is just something that gets thrown in my face again and again and as hard as I try to move past it and move on to those bigger issues, I keep getting hurled right back into this ridiculous r-word debate because it refuses to die.

Part of me wants to just give up.   Maybe it is a lost cause.  If "mongoloid", as hideous an outdated a term as could be is the new "retard", then I don't know how to fight it.  Just like "thug" is the new N-word.  There are always going to be people that want to keep those that are different over there...in that "other" place.  I cannot reach those people.  

I can appeal to the people that think kids like mine deserve dignity and respect to speak up, though.  I can remind them that words matter.  

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)

Negative

Recently, a friend of mine made an offhand comment about some of the negative things that I had posted on Facebook.  I was a bit taken aback, mostly because over the last several (probably six or so) months, I have been really striving to only post positive things.  The only exception to this rule is that if I post something ugly, or horrible or sad, I won't just post it with a sad face :( ; it will be something that I am actively working on changing.

For example, when I post about the plight of Russian orphans with Down syndrome, it's not to boo hoo about it (though, it does make me cry), it's to call attention to something that I am actively working on changing.  Change takes time.  Change takes outreach and noise.  Change takes reaching out to people who speak different languages.  Change means shining a light on perceived "norms" and asking questions and challenging individuals to look at things differently.

Facebook has it's issues, and being a huge time waster is one of the biggest; so in between posting memes of funny cats and hilarious "Fifty Shades of Grey" reviews, I want to spend some time doing something good, even if it doesn't appeal to everyone.

I mean, I get it.  The world is effed up.  There is a ton of stuff to bring us down; crazy world leaders, environmental degradation, extinction of beautiful animals, children in danger...the list is endless.  If you let yourself get sucked into all the horror, it's hard to feel positive about anything.  I mean, why bother?  It's so easy to be consumed by it all and to feel like whatever good you can do will be swallowed up by the rest of the crap.  Maybe it's best to just focus on the good things and ignore the rest.

Except, I can't.

I mean sure, I love cute pictures of babies (here) and animals (here).  I love videos that help restore my faith in humanity (like this) and (this) and (this).  I KNOW that there are more good people than bad and I KNOW that there are so many individuals hard at work, changing things for the better, in small ways and large.  

But, the bad stuff is there and it needs facing to keep it in check.  

Every day, every minute, I have a choice.  I can ignore the bad, stick my fingers in my ears and say "la la la, I can't hear you" and continue playing Scrabble, or I can take a deep breath, see what issues feel pressing at the moment and dive in.  It's constant battle between the two.  Sometimes, the issues are so absolutely soul crushing that I need to walk away for an hour or a day or a week before picking up the thread again.

Sometimes, I am so struck by the hatred (this guy), that I feel paralyzed and it takes me a few days to formulate a plan of defense.  I was ready to begin writing about the Michael Laws' of the world, when my friend posted this.

My first reaction was "god damn it.  I can't deal with every slight, every single infraction, every joke made at the expense of kids like mine" and I played some Scrabble and scrolled and tried to formulate the blog post that was percolating along with the coffee and watched the snow fall fast outside my window.  

My second reaction was "god damn it!  I have to email the guy!" and I did.  This is what I wrote: 

Steve, 

I get that the onion is satirical and my sarcasm muscle is usually sore from overuse. But, kids should be off limits.  

Babies with Down syndrome are still, in 2013, routinely sent to filthy orphanages to rot in Russia.  Children with Down syndrome in this country still have to fight to be included in school, in sports and in a society that too often does not want to "deal" with them.

My kid and children like him are not broken gifts.  They are cherished members of their families and their communities because I and many parents like me have fought for years against prejudice.  

Please don't make this job harder.

It took me all of five minutes and it felt good hitting "send".  I supported the friend who posted it first and supported my kid in NOT ignoring it.

I'm not saying that I will jump on every bandwagon.  There are only so many hours in the day that I can tweet celebrities who think calling people "retards" is still honky dory.  There are only so many items that I can focus my attention on before I become pulled in too many directions.  

The only things that keep my going are the fact that I am trying, in spite of the overwhelming-ness of it all, to make the world a more welcoming place for my children and that I am not alone in my quest.  

Alone, I would hardly make a ripple in the vast ocean of insulting, unfunny and downright dangerous debris that I wade through.  Together, we make waves.  From the tiniest splash made the first time a parent kept their kid home instead of placing them in an institution, to the parent whose kids are going to college and driving and getting married, we are making our presence known.  

You feel that wave?  That's us pushing back.

Why the R-Word Sucks with guest blogger, Nidhip Mehta

This post is a culmination of spending years trying to convey my feelings.  You can read this year's r-word campaign posts here and here.  I have written at least 427 other posts on the subject over the last 14+ years, but I will spare you those.  This latest post came from hearing about Kat Von D and her lipstick line at Sephora.  Long story short, they collectively decided that naming a lipstick "Celebutard" was a hilarious idea.  

Celebutard - from the Urban Dictionary:  

A famous stupid person. Typically refers to the current crop of vapid celebrities.

Similar, but not exactly the same as Celebutante: 

A person of high society and wealth whose famous just for the fact of being rich and fabulous. A socialite who is "famous for being famous."

It seems that no one spotted the irony of a tattoo artist who is famous for having a reality show and for sleeping with Sandra Bullock's ex calling anyone out for being vapid, or famous for being famous.  But, whatever. You can read more about that here.  

Once the disability community got wind of it, it took about 24 hours of tweeting, sharing and public shaming to get Sephora to stop selling the offensively named shade.  It was a victory, but a hollow one.  I am glad that as a community we were able to mobilize and have our voices heard.  I am troubled by the fact that it's a battle we have to keep waging.  

Here's another great post from a friend, here.

In the midst of the fracas, a good friend of mine, Nidhip, decided to play Devil's advocate.  He posed a few, well thought out questions asking why the r-word is so offensive.  He got quite an eye/ear full from me on the subject. We had a little back and forth with no real resolution, just a lot of anger, hurt and frustration on my side.  Again, I was getting nowhere and with someone who liked me and actually cared about my feelings!  How was I ever going to get the point across to anyone else?  

I went to bed fuming and in the morning I realized that getting upset was getting me exactly nowhere.  To top it all off, I was going to quite possibly lose an old friend in the process.  I did a little soul searching and then I wrote a note to Nidhip that said:  

Hey. good morning! First of all, thanks for getting me so riled up last night, it made me really think about things. Second, sorry about telling you to get off your high horse. I have an equally tall one and don't like to have it pointed out to me. Anyway, I was thinking that this conversation is a good one. I want people to understand where I am coming from, but it is very hard if you are not in the same situation. It's frustrating, to say the least. From the outside, you might see it as a debate over a word (which, in the scheme of things, seems inconsequential) but for me and many others, it's a fight for inclusion, for dignity, for justice and for civil and human rights. The word merely is a reminder of how far we still need to go in these areas.

I'd really like to write some more about it. I know I won't convince everyone, or maybe even you, but I would like to try and engage in healthy debate. As you can tell, debate is not easy for me. Arguing is fine if I don't truly care about the answer, but when I do...oh boy. I am all emotion. I know logically that a word should not hold so much weight, but emotionally, it does, it really does.

I'd like to try and work through this some more. Would you be okay with me putting your questions in a blog post and answering them? Or would you want to write something different? Or go back and forth? I think it could be a really good thing. If you don't want to add anymore, I understand, but if you would allow me to use your questions, I'd be grateful. Think about it.

And being the good guy that he is, he said this:

Hey, first of all, I just want to say I'm sorry again. I know with hindsight, you're thanking me, but I really should've gauged the situation better before opening up something which clearly has an emotional resonance. You're right, I tried to intellectualize something which, at its heart, is emotional. But I honestly think that it helps to do that when you're trying to create awareness or change minds. Which is why I was getting at you for simply saying that it shouldn't happen because it makes people angry. As you know, progressive thinkers like us do a lot of things that make other people angry, but that shouldn't stop us from doing it. Like wanting that anybody can marry anybody else, regardless of what the Bible says. That sure makes a ton of people angry, but I'm gonna go on wanting it.

Anyway, like I said last night, my questions came from a point of inquiry, not argument. I genuinely wanted to hear your point of view and well... I got it, I guess.

Sure, I'd be okay with my questions in your blog... after all, that was my point in bringing it up... to initiate discussion. But I really don't want to get anyone upset, let alone you. You are a great person and I admire you a great deal, but I want to respect your limits and tolerance as well.

And thanks for reaching out to me this morning. I really felt bad about upsetting you and regretted bringing it up. I admire that you're willing to put that aside and engage me again. That says a lot about you.

So, here is Nidhip's query. I will break it into parts in order to address different pieces of the issue; but first, here it is in it's entirety:

Ok, so my question is essentially this:

I sympathize with the feeling of being offended by a word or phrase. Ever since I learned that the R-word is offensive to some (particularly to those who have family members that are intellectually disabled), I stopped using it. I don't even use it when those people are not around, and I try to remind others when they use it. Also, I understand the negative connotation when the word is used to describe someone with Downs Syndrome or autism spectrum. It's really not appropriate, and it's not such a big thing to simply use another word.

What I don't completely understand is when the word is used outside of that context; when the intent has been changed from the original meaning. This happens in language. It happened with the words "moron" or "idiot" or "stupid", which were all used at one point as clinical descriptions of people with intellectual disabilities. These days, no one bats an eye or hesitates to use these words. Heck, even people who have family or friends with intellectual disabilities use these words, which a century ago had the same meaning and connotation as the R-word.

Is it not possible to divorce the word from its meaning? Can the perception of those who use the word be more nuanced? Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?

I'm not exactly saying that people should simply ignore it when people use the R-word, but that perhaps they should react in accordance with the intent in which the word was used, and not simply react from pure emotion.

I also think that in order to make people better understand why they should not use the R-word, the reason given should be more than "it makes me angry" or "you'll never understand unless it happens to you". I think these don't help the cause, primarily because unless the person involved is a friend or relative, no one really cares whether something they say makes some anonymous person angry. I believe in many things that make people angry, like feeling that gays should be able to marry or that all people should have access to affordable (or free) health care. The fact that this makes some people angry does not bother me in the least; it's a fundamental disagreement. So, I guess that in order to better understand the issue, I'd prefer to see a more intellectual rationalization for not using the word, as opposed to an emotional one.

Of course, what I prefer doesn't always matter. There may not be, after all, an intellectual rationalization. Maybe it should suffice that enough people (whatever that critical mass is) find it offensive. But the intellectual part of me wants to know where to draw the line, because it seems very fuzzy and, to be honest, hypocritical. Especially when I see the words "moron" and "stupid" being used all the time. I don't know, perhaps it simply has to do with the amount time that passes for a word to fully change its meaning. It's difficult to parse, unfortunately.

Again, I want to reiterate that if the word offends people who I like and admire and want to stay friends with, that's good enough for me. But it may not be good enough for everyone.

My response: 

I think there are essentially three parts to this:

1. Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?
2. Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
3. Is there a way to intellectually rationalize why it is wrong?

Is it not possible to divorce the word from its meaning, in the way idiot and moron have lost their original clinical meanings?

First, some people are bothered by the words idiot and moron and imbecile because of their historical significance to people with intellectual disabilities. For myself, I feel that those words have evolved to a point that when someone says any one of them, a picture of a kid like mine does not pop into their heads. I haven't seen any offensive memes using a picture of a kid with Down syndrome and the word "idiot"; but I have seen plenty with the word "retard". That makes them different, as far as I'm concerned. Maybe it's the role of social media that makes this word different (for me) from the rest. It certainly plays a part.

Secondly, I don't wish to drag up every old word used in reference to people with i/d. I feel they have run their course, history has moved on and so should we. The difference with "retard" is that it IS in common use these days and because of that, it keeps anyone who could be called "retarded" by a doctor (even though it is going away in the medical field) apart from everyone else. It makes them the "other", not like us, not worth worrying about offending, maybe, not even quite human.

Thirdly, though I could wait for this word to become innocuous, I don't want to. I want to stand up now and say that it matters to me and it matters to my family and many, many families like mine.  Why should my kid, who has been called a retard more times than I can count, have to hear that word in any form (including added "tard" to the end of other words)?  

Shouldn't there be a distinction between those who use the word offensively and those who do not mean offense?
Why should the offender (even if it was not meant to offend) get away with impunity?  I see it as a matter of simple humanity.  Most people don't want to hurt people's feelings, even people they don't know.  I think educating those who truly don't realize that their words are hurtful is important.  It's not about getting angry (Nidhip:  you seem to only see my anger and not my hurt.  I'm wondering why?), though I do get angry about it.  When someone uses the word "retard" and I am in earshot, more often than not, I use it as a teachable moment.  I avoid calling people out in public unless they are being blatantly disrespectful, but I typically pull them aside later on and say something to the effect of "this is a hurtful word, I know you didn't mean it to be, but it is" and nine times out of ten, they are apologetic.  Some (many) still use the word, but at least I have planted the seed.  If they hear my voice in their heads the next time they say it, it might not feel as satisfying and hopefully, they will re-think it.

The reason I brought up being hurt versus being angry is that it is much easier (I think) to dismiss anger than it is to dismiss hurt.  People get angry for all sorts of reasons (as Nidhip brought up) that I don't agree with.  Frankly, I think much of their anger is misplaced.  But hurt?  I don't want to hurt people or be hurt.  Knowing that the r-word can be hurtful should be enough.

While there is a difference between being deliberately hurtful (Hey, Retard!) and being unintentionally hurtful (That's so retarded!), the word still hurts.  It is associated with being bad, stupid, ugly and foolish AND it may be a part of a doctor's report; therefore making it a part of a person with a diagnosis.  Would you want any part of what makes you YOU be a slur? 

Is there a way to intellectually rationalize why it is wrong?

I've said that to disability advocates, this is the N-word. Do we use the N-word in any form?  No.  Because most reasonable people get that any form of it is degrading and wrong.  They wouldn't dream of saying "oh my god, you are such a nigger" to a friend who's acting silly.  But, "you're such a retard"  is fine.  Why?  What is the difference?  

The only difference I see is that blacks have had (and in many cases, still need) their civil rights movement, while the civil rights movement for the disabled is still in it's infancy.  You would be horrified if a school refused to accept a child because they were black today; but every day, schools refuse to accept children who learn differently, many without even giving them the chance to show that they can adapt in a mainstream classroom.

This happens today.  

Yes, kids with i/d learn differently than other kids.  And typical kids learn differently from each other.  With creativity, love and support, everyone wins and everyone learns more.  There is no excuse to leave some kids behind for any reason, whether it is sex (in some parts of the world, girls are still under-educated), race (hello?  American south in the 1960's?), or ability (today, all over the world).

My intellectual rationalization would be that the r-word keeps people with intellectual disabilities separate from the rest of society the same way the n-word kept black people separated from society.  Both words say "you are different, you are not worthy, you are not accepted".  If you look at the history of the civil rights movement, you will see that many of the things that were done to black people are still being done to those with developmental disabilities.  The only real difference is that not many have yet noticed that the disabled, as a group, are calling for their rights as human beings to be recognized.  Like African American, women and gay people before them, people with disabilities are calling for equal treatment.  Eliminating slurs against them must be a part of that movement.

Rousing the Rabble

I am not one to remain quiet for very long.  Remember the woman in "Eat Pray  Love" who is "in silence"?  I would love to try that, just to see how far I could get.  I think, in my case, silence would have to mean not writing in a public way (meaning, my mom and sister and best friend won't read it), as well.  I get my ideas across much better through words on a page or screen than I do in conversation.

To keep these words and opinions to myself would be difficult, to say the least.  I would probably need lots of chocolate and terrible movies as a distraction.  Or maybe I could start running again.  That would certainly be the healthier way to go.

I should preface all of this by saying that I don't ever really intend to shoot my mouth off without thinking.  That is why I prefer writing.  I can delete before anyone sees how really crazy I am.  It does not work that way on the phone.  No.  On the phone, a person can sit in their comfy office, surrounded by colleagues that have already been warned of your lunacy with only your muddled CaliforniaMidwestNew Jersey accented voice over the speakerphone in your corner.

Sigh.

Change is really hard.  Change for the better should be much easier than it is, but somehow, we get caught up in what is easy and what is familiar and just what IS.  Sometimes, we get complacent.  Sometimes, we just wish someone else would take up the mantle of our cause and let us sit quietly on the sidelines reaping the benefits.  I'm not knocking that last part.  I have enjoyed many things that others have given their blood, sweat and tears to secure for me.

At some point, however, each one of us needs to stand for something we believe in and let the ones that come after reap the rewards.  Because if we don't, we cannot be sure that there is someone to take our place in the fight.

I just got off the phone after an emotionally exhausting hour of having my ass handed to me by someone that I thought was on my side.  It can be hard to convince people outside the circle of special needs that changes need to be made, but, when you can't even gain consensus with people who are supposed to understand, well, let me tell you, it's a punch in the face.

It cannot be a knockout punch, though.  I need to get out the smelling salts, dust off my pants and my ego and go out there again and again and again, because I know it is the right thing to do.

The main focus, for me, is the human and civil rights cause of inclusion on all levels for those with intellectual disabilities.  If you look at all the civil rights causes that have grown before this one, for blacks, for women, for gays, the fight continues until full acceptance and inclusion is achieved.  This has not really happened for any of these groups, but women have come pretty far (there is just that pesky gap in pay, limiting reproductive choices, rape culture...), blacks have as well (again, a huge list of what could be better) and gays still can't get married in most parts of the country.  So, those fights continue.

For individuals with intellectual disabilities, the fight is still in it's infancy.  Sure, we have come a long way since the days of putting your kid into an institution at birth to be forgotten.  Well, in this country, we have.  Around the world there are thousands and thousands of forgotten children in cold, soulless, hopeless rooms that they will never leave while still breathing.  

http://www.disabilityrightsintl.org/learn-about-the-worldwide-campaign-to-end-the-institutionalization-of-children/ 

So, with all the horrors in the world, I can kind of see the tendency to pat ourselves on the backs and say "Look how much better we are!".  But, when it comes to human lives, better is not enough.  

We need to rise above better and become 

The best we can be.

Open.

Welcoming.

We need to change the way people with intellectual disabilities are viewed.  We need to change hearts and minds.
We need to show those in power that we are all a sum of our strengths and weaknesses and not numbers on a ledger.
We need to show that there are ways to contribute in this world other than through our monetary earnings.
We need to show that equal treatment does not mean special treatment.
We need to be a voice for the voiceless, the powerless and the most in need of support.

We need to get out of our bubble; no matter how safe we feel in there.

The r-word part deux or 247, but who's counting?

So, yesterday was the annual "Spread the Word to End the Word" day of awareness.  Many in the intellectual disabilities community celebrated by wearing different colored socks, event t-shirts and other things and some of us, many of us, got our thoughts down in a blog post.  This is the part where I need to apologize because, apparently, I cannot figure out how to take part correctly in a "blog hop" where all the same subject are linked together.  I tried, believe me, I did."

I spent a lot of time thinking about the word, yesterday.  I got really angry a number of times, exasperated that people JUST! DON'T! GET! IT!!! Even people who claim to be champions of people like my Charles were getting on my nerves.  It's enough to make you want to throw in the towel and say "Enough!  I just don't care anymore!  Say whatever you want, assholes!"

So, I stepped away from the keyboard.  I did a tough workout (my arms are killing me).  I walked on the treadmill.  I had a surprise visit from some friends and their baby and I forgot my anger for awhile.  Later on, after Charles' last Special Olympics basketball game of the season, I started thinking about what I would write today and I thought of this...

About 12 years ago, I had some friends who were a gay couple.  Their daughter was a few months older than my youngest, Evan and a few months younger than my middle, Charles.  We bonded over being pregnant and all that and they were just cool to be around, so we had a few play dates when the kids were really little.  

One afternoon, I was standing in their living room and I referred to something as being "so gay".  Mind you, I had my little toddler, Charles, with Down syndrome climbing all over me at the moment and still, this was the word I chose.  I was kind of wrapped up in whatever the kids were doing, so I did not see my one friend's face when I said the word.  I imagine, she showed some kind of disapproval, though.  

She didn't say anything this time, but let me continue saying whatever I was saying, probably feeling troubled and hurt, the way I do when I hear someone say "that's so retarded".

The day went on and I used the term again.  This time, she stopped me, looking very hurt.  I said all the things that people say "I didn't mean it that way!",   "you know what I mean!", etc., etc... I defended my word choice (sound familiar?).  I accused her of being overly sensitive (do you hate me, yet?).  I left that day a little troubled by her hurt and anger, but really not hearing what it was she was trying to tell me.
A few days later, or maybe a week, or maybe a month, I overheard someone say "that's so retarded".  They weren't talking to me or about my Charles, but my guts twisted.  I got that sick feeling that I get when I am upset about something.  I looked at Charles and I got it.  I just "got" it in that moment.  My next move was to call my friends.  I was glad when my friend, the one who had been hurt, picked up the phone.  I told her what had happened; that I now "got" what she was trying to tell me; that I knew I had been wrong and I was really, really sorry for hurting her.  We cried a little.  Maybe, a lot.  It was good.  It was cleansing.  I felt like a weight had been lifted.

As I think back on this, I tell myself that not everyone is going to get it.  No matter how much I beg, reason, cajole, cry and scream (mostly scream), there are going to be people that just don't get it.  I don't have to accept that, but if I don't, how crazy am I going to make myself?  It doesn't mean that I will stop trying to make people understand.  I will always do that.  But, it might mean giving people that truly matter time to process. Anyone whose kid has an IEP can relate to that term.  If I didn't get it, if I was so hard headed and ignorant and callous, why should I expect other people to read a blog and go "OH!!! HOW WRONG I HAVE BEEN" and start begging me for forgiveness?  I shouldn't.  If some do, great.  Maybe, though, we all just need a little time for processing.

Something else I was thinking about in reference to the r-word and all that it means, was movies and t.v. and it's use in those mediums.

It is used, a lot, still.  I have never seen Tropic Thunder and I won't.  I normally wouldn't speak to something I hadn't actually seen for myself, but, I have heard enough about it from people that I trust to know that it is one of the worst offenders.  I loved the movie "The Descendants", but that scene in the car hurt.  It really did.  

http://www.youtube.com/watch?v=oNQsTV0wb5Y

It would probably in my top 20 favorite movies if that hadn't happened.

I loved the show The Office when Steve Carell was still on it. I can still remember a scene in which the words retard and retarded are used and I have thought about them many times, since.  

I love the movie "The Ringer".  I love it.  My whole family loves it.  It is crude and vulgar and yes, the r-word is in it, but here is the catch, I think it shows people with intellectual disabilities in a great light.  Tim Shriver, one of the biggest champions of the developmentally disabled was consulted heavily and is listed as the Executive Producer on the film.  He saw the good a movie like that could do for this community.  He saw what I see when I watch it, that you can laugh at it without laughing at the disabilities.  You see the Special Olympics athletes as human, as having feelings, as being funny and talented.  You don't laugh at them (maybe some do), you laugh with them.  It makes all the difference.

The difference with the r-word being used in "The Descendants" and in "The Ringer" is huge.  In the first, "The Descendants", it's the protagonist using it, you like him, he's the good guy and the victim.  He's still an asshole for using that word so casually.  It makes me like him much less than I would have otherwise.

In the second, "The Ringer" and in that episode of "The Office", the word is only used by the very, very clueless:  the jerkface uncle, the mob boss, and it's inferred by Lynn's icky boyfriend.  The unlikely hero in the movie, Steve (Jeffy), played wonderfully by Johnny Knoxville, tells his uncle off for using terms like "feeb". 

http://www.youtube.com/watch?v=cx8ZWK0rUWA

He befriends his teammates.  He becomes one of us.  It's beautiful, really.

In "The Office", we all know that Michael Scott is clueless.  Does anyone really want to be a Michael Scott?  

http://www.youtube.com/watch?v=9sjuBF0-sRE

Of course not.  It still bugs me to hear the words in this scene, but if I think about it, it's a good thing.  It really is.  The genius of it, intentional or not (I'm thinking not, since Ricky Gervais has never exactly been a friend to our community), it makes you think "Wow.  That guy is really clueless".  At least, that's how I see it.  And if I see it that way, don't some others?  I can't worry about those who will never, ever get it and don't want to anymore than I can convince some truly heartless people that my son deserved a chance to be a part of our family.  There will always be the holdouts.  It's the same as with anything else.  There will always be cruel people with bad intentions, not just for my kid, but for animals, for women, for other races and ethnicity's.  Though I can't completely ignore these people, I can't focus on them, either.  It would make me crazy(er).  It would be a waste of time.

All I can do is spread awareness, spread love and give wait time for processing.

Spread the Word to End the Word 2013

My middle son is thirteen.

He is funny, he is silly, he is the physically strongest thirteen year old I have ever encountered.  He loves to take movies on his I-pod Touch.  He loves messing with the cats.  He calls his friends way too early on Saturday so he can spend the day beating them at Godzilla on XBox.

He laughs easily and makes other's laugh easily.  He can tell you in what movie he heard that song on the radio in about three seconds...it may take you a bit longer than that to realize what it was that he said, though.  His speech is somewhat hard to understand, and he has only two volume levels:  Whisper and Shout.  We are working on that.  

My son, my Charles, has Down syndrome.  I won't say that it isn't a big part of his life, because it is.  It's become cliche to say that it doesn't matter that much, but it does.  Anyone who says differently is fooling themselves.  Down syndrome makes him look a little different, learn a little (with some things; a lot with other's) slower and makes him the object of ridicule for those who "don't get it".

The word "retard" makes me cringe, as it does most other people who love someone with an obvious disability.  My son's difference is painted on his face, in the hues of Down syndrome.  He cannot escape it.  He also cannot escape his tormentors.  You might think he doesn't hear you when you laugh at him, but he does.  You might think he does not notice that you exclude him, that you elbow your neighbor and smirk when you see him, that you are only nice when there are witnesses, but believe me, he does.  You might think it doesn't bother him.  You would be wrong about that.

You might think it is just a word.  You might say that you have a right to be as cruel and hurtful as you want, after all, free speech is protected under the Constitution.  You would be right about that.  But, is it right?  Really right as in okay?  Would you feel okay if people called you the word that meant the weakest part of you, day in and day out?  You probably wouldn't.  Then again, you probably couldn't think of a word that was worse than retard.

I guess that's the point.  You call your friend a retard as a joke, because it's the worst thing you can think of.  You call your friend a retard because it is funny to make fun of those whom you perceive as helpless.

Let me tell you something:  if you have any kind of humanity, one day you will have someone in your life that is affected by some kind of disability.  Your mom might have a stroke and talk funny for awhile.  Your dad might have a crippling injury and need to use a walker or a wheelchair.  Your friend might be in a car accident.  You might discover ( as I did with my oldest son) that your healthy, gorgeous, PERFECT three year old has autism.

Would you call any of them retard?  Would you want other's to?  Would you feel ashamed and sick that you had ever used that word casually, or otherwise?

As to the last, I hope so.