Monday, October 26, 2015

Living in a World with That Word

Last week my exhausted husband and I decided to have a movie night. Our two-year-old son Joshua was recovering from having his tonsils and adenoids removed, and it had been a rough few days to say the least. So we made popcorn in the microwave, settled onto the couch, and rented a free movie off our DVR.

The movie was terrible. Oh, my goodness, just dreadful. It was supposed to be a comedy, but it was one of the laziest things I’ve seen in a long time. Fat jokes, fart jokes, and f-bombs seemed to be the screenwriters’ constant fallbacks for cheap comedy. But those weren’t what stuck in my memory from this awful movie.

What stuck was when one character asked another, “What are you, [expletive] retarded?”


Here’s what I have to say about That Word, which offends me more than all the four-letter words you could cram into a sentence. It’s outdated. It’s degrading. It’s ignorant. It’s heartless. And it is certainly not funny.

As a writer and educator, I value and encourage the use of a rich variety of words in our language, as well as the right to use them freely and openly. Yes, fellow citizens, you are free to use the R-word, just like you can use the N-word or the F-word to describe someone.
But there is a difference between “can” and “should.”

The terminology used to refer to individuals with mental or intellectual disabilities has evolved over more than a century of modern medicine.  Past terms included words like "idiot," "imbecile," and "moron." Yes, those words were used in medical textbooks! 

And over time, those words in turn fell onto what's called the "euphemism treadmill," meaning that terms originally meant as medical classifications were twisted and brought into common use as insults. Eventually, some of the words lost enough of their original meaning to no longer be widely thought of as offensive or derogatory to people with disabilities.

"Mental retardation/mentally retarded" was introduced in the twentieth century to replace "idiot" and "moron" because it had no such negative connotations. However, it didn't take too long for various forms of the R-word to get tossed onto the euphemism treadmill and used as insults. 

It's not just about That Word being used to refer to someone with a disability, though that is despicable. It's also about using it as a synonym for "stupid," "annoying," or "worthless." It takes an outdated medical term for people who are often already vulnerable and marginalized and tells the world that it is an insult to be compared to one of them.

Fortunately, our society's response to the use of the R-word has evolved, alongside improvements in the American mental healthcare system and in the societal treatment of individuals with disabilities. Rather than let it settle in, campaigns such as Spread the Word to End the Word (in which my sister Julianne has been an enthusiastic, active participant) have sought to excise the R-word from our national vocabulary. 

And in 2010, President Obama signed into law S.2781, also known as Rosa's Law, which removes the terms "mental retardation" and "mentally retarded" from all federal policies, replacing them with the person-first language of "individual with an intellectual disability."

Yet, in lunchrooms, chat rooms, and even boardrooms, the R-word persists.


“Well, what about this euphemism treadmill?” the more cynical among you might ask. Isn’t it only a matter of time before the R-word becomes outdated enough to be used relatively innocuously, like “moron” and “idiot,” and something else becomes the new word to be offended by? Is this obsession with political correctness just our cover for being too sensitive?

In other words, does this fight over a word really matter?

I have two answers for that.

The first is not my own. It’s a letter penned by an outstanding young man named John Franklin Stephens back in 2012; I recommend following the link to read his clear and gracious words. John (who, like my son Joshua, has Down syndrome) wrote an open letter to address a political pundit’s use of the R-word during the presidential campaign.

In his letter John explained the painful, belittling effects of That Word: “You assumed that people would understand and accept that being linked to someone like me is an insult…”

Whether you call someone with an actual intellectual disability by the R-word or use it to compare a person or situation to them, it makes no difference. It hurts. It hurts people who are statistically among our society’s most vulnerable, along with the people who love them.

Why on earth would you still want to use a word that does that?

That brings me to my second answer.

There are parents who say things like, “Oh, I dread the day she starts kindergarten!” or “I dread the day he gets his license.”

Want to know which day I dread?

I dread the day my son comes home from school in tears and asks me why someone called him That Word.

So yes, this fight over a word really matters.


Our house is a safe zone—my husband and I will do everything in our power to make sure our son never hears that word here. The same goes for our family gatherings, play dates, and birthday parties. But That Word is still out in the world, and deep down I know that it’s only a matter of time until Josh hears it at the grocery store, or at school, or at the park, and realizes what it means.

It’s only a matter of time until someone uses it as a weapon against my child’s ears. That Word is a ticking time-bomb strapped to a parent’s heart.

But it doesn’t have to be that way.

There are three simple things you can do that would spare my heart and the heart of my little boy, along with the hearts of countless other parents, children, siblings, friends, and neighbors. Are you willing to do three simple things for all of us?

  1. Don’t use the R-word. There’s just no reason to do it. Our beautiful language is full of other descriptors, exclamations, and insults. Use one of them. The R-word isn’t funny, appropriate, or even medically accurate. Using it only makes you seem like a person who doesn’t care about others, and if you’ve read this far, I’m hoping that you do care.
  2. If you have children, or students, or other little ones in your care, teach them not to use the R-word. And hold them to it. If you wouldn’t let your five-year-old use the N-word, then why would you let them use the R-word? By teaching them that some words are too hurtful to use, you’re not teaching them to repress their thoughts or be afraid to share their opinions. You’re simply teaching them to care about others.
  3. If you hear the R-word, stop it in its tracks. This is the tough one—one I still struggle with, as a mild-mannered, non-confrontational person. But it’s very important. If a child on the playground uses it, if a server at a restaurant uses it, even if your drill sergeant uses it (yes, follow the link; it really happened!)—call it out. Say to that person some variant of, “Hold up. That word hurts someone I love, and it hurts me too. In the future, please don’t use it.” Hopefully you will be met with an apology and can promptly let the matter drop. If you’re met with a sneer or a snarky response, then you will at least know that you tried.

(Note: If you are in a situation where you think it would be unsafe to do this, then please just walk away. The sad truth is that you can’t win ‘em all, and I wouldn’t want you to get injured trying.)

Here’s why #3 is so important to me. On the inevitable day that my son comes home from school after hearing the R-word, his recounting to me won’t have to end in tears. I can hope that it will end with, “But my friend stuck up for me, and then I felt better.”

We live in an imperfect world. That Word will never be truly banished from our cultural lexicon. There will still be terrible movies that try to play it off as humor, rude drivers who throw it out when you take "their" parking space, and otherwise-wonderful people who use it completely unintentionally, not realizing the effect it has. 

But I can live with all of those frustrating, hurtful things if I know that we're working for something better. We can hold ourselves to a higher standard with the words we choose. We can speak with care and compassion. We can reject contempt and judgment. And if we teach our children to do that, then they will have a better world.

So please, teach those around you that the R-word is never okay. Your child could be the one that saves my child's heart. Thank you.

Tuesday, July 7, 2015

Unexpected Unicycles (Guest Blog for Green Grandma)

Good afternoon!

Today I'm delighted to bring you a different kind of post -- I have guest blogged a post for Green Grandma, a wonderful, creative, indispensable site that promotes greener, healthier living for families. The Green Grandma herself, Hana Haatainen-Caye, and I met through the Pennwriters organization several years ago, and she invited me to write a piece about raising a child who has special needs.

The resulting composition is titled "Unexpected Unicycles," and it centers around the allegory of riding a unicycle when others around you are riding bicycles (because you know I love a good allegory!). Here's a sneak peek below -- and if you like it, please follow the link to read the complete original post!

Picture yourself, your family, and your friends together, all riding your bicycles along a sunny road. Then imagine that someone rolls up on a unicycle. How do you react? What do you say to them?

I have been the mother of an outstanding child named Joshua for about two and a half years now. There are tranquil nights when I kiss Josh’s sleeping face and thank God for the quiet, safe house that holds him, and there are days when I pull the dog’s toys out of Josh’s mouth and wipe Crayola marker off the walls...

Read the rest here!

Thursday, June 25, 2015

What You Didn't Expect When You Were Expecting

Good afternoon!

The following is a slightly lengthier version of my letter-to-self that was originally published at Dear Self About Down Syndrome, a heart-filling and wonderful blog of families' stories about what they would tell their past selves when receiving their children's Down syndrome diagnoses. I hope it touches you in some way -- thanks for reading!



Dear 2012 Self,

I remember you. You were utterly, purely delighted about being pregnant. You figured out creative ways tell family and friends. You gulped your prenatal vitamins each night before bed and lay with your hand on your belly, imagining the little person you would raise. You even started a humorous Twitter account for “Little Pierogi,” as your closest friends called the baby, posting cute after-checkup updates like “My heartbeat is perfectly in time with ‘We Will Rock You.’ #NoCoincidence”

Then there was August 17.

You had just found out the day before that you were having a boy. Your husband David was already talking excitedly about Cub Scouts and soccer and camping trips. You were sitting in your office and received a call from the OBGYN’s office. An intentionally perky voice informed you that your blood screenings had indicated an “elevated risk” of Down syndrome.

“What’s elevated?” you asked.

“Well, for your age it’s typically one in 1,000. With these results it’s 1 in 48.”

You started to shake as she explained things like “soft markers,” amniocentesis, and maternal blood tests. She pointed out that 1 in 48 was barely a 2% chance… but I think even then, deep down, you knew.

You hung up the phone in a fog. You called David and your mother in tears. To say this was unexpected was an understatement. You had had the “perfect” pregnancy so far—no throwing up, no weird cravings, no diabolical mood swings—and you, like any expectant mother, were certainly not “expecting” a child with Down syndrome.

You scheduled the “Verifi” blood test for the next week, rather than an amniocentesis test; 99.8% accuracy was good enough for you. You wiped your eyes, opened your office door, and counted the minutes until the weekend.

That night was the first time you felt the baby kick.

The next week passed. Your blood was shipped off to a lab in California and tested. Results weren’t expected until after Labor Day weekend—the weekend of your family reunion, where second cousins you hadn’t seen in months would be congratulating you and asking all about the baby.

What would you say?

And then there was August 30.

It was your first night of class for the fall term, a class you had been so excited to take. You almost didn’t go. The doctor called you that afternoon—the results had come back early, confirming that your Little Pierogi had three copies of his 21st chromosome. Your “elevated risk” had gone from 1 in 1,000 to 1 in 48… to 1 in 1.

Questions of nursery themes, preschools, and sports teams turned on a dime, to questions of heart defects, learning disabilities, and life expectancy. All at once you were drowning in it, clinging to the unborn child you already loved and to the pleasant, successful, “normal” life you had assumed he would have. You doubted yourself. You felt fearful, bewildered, and powerless, more deeply than you ever had in your life.

But here’s what happened next, Self.

You went to class that night. You pulled it together enough to sit in one of those molded plastic chairs, and when it was your turn to introduce yourself, you gestured to your belly and accepted congratulations with a smile. You hoped that you had fixed your tear-streaked makeup enough that your classmates wouldn’t think you were a weirdo.

That night in bed, his name came to you: “Joshua.” It wasn’t even on your list. But it was, simply, his.

The next day you and David drove to your mother’s house for the weekend. Did you still want to go to the family reunion, they gently asked? Yes. Joshua was coming, and you wanted everyone to know it.

You went to the reunion, full of hugs and congratulations and well-meaning questions. You told them his gender and his name. You didn’t mention Down syndrome yet, because you needed to wrap your head around it before you announced it to others. That was okay, Self. You knew you would get there.

And over the next few months, you did. With a humongous amount of love and support, you reclaimed the wonder and delight of expecting a baby—not just any baby, but your Joshua. The Joshua who would be your firstborn, your amazing son, your “Goosie,” your “Honeybee,” your precious child. You decorated a Peter Rabbit-themed nursery. You put up your Christmas tree. You turned in your term paper. You gulped your prenatal vitamins before bed and lay with your hand on your belly, imagining Joshua.

Through it all you were continually lifted up by your family, your friends, your church, the amazing staffs of Magee-Womens and the Down Syndrome Center… and of course, the One who made Joshua—you were pretty darn sure He knew exactly how many chromosomes to give him.

And then there was January 3, 2013.

 You delivered Joshua Lyle at 11:13am, at the same hospital where his daddy was born. He was the picture of health—a pink, squirming baby with dark hair and alert eyes. Joshua tried to put his feet down on your belly and stand up at the ripe old age of ten minutes. He was perfect. And in the years since, Joshua has amazed you at every turn with his abilities, his curious and insightful mind, his kind spirit, and his sense of humor. He’s still perfect to you, and (spoiler alert) he always will be.

I want to tell you one more thing, Self. It’s about that word you heard back on August 17, 2012: “Risk.” The first (wholly inappropriate) synonym for “risk” in my online thesaurus is “danger.”

You were never in danger of having a child with Down syndrome.

The only “risk” those tests back in August presented to you was that, unlike most parents, you got to know about one of Joshua’s chromosomes ahead of time. That knowledge led you down an unexpected journey of fear, focus, peace, and (ultimately) excitement. Thank God (no really, just stop right now and thank Him again) that you didn’t get stuck at “fear.”

Despite “risk” being a pretty standard medical term, I do not think it fits into a discussion of Down syndrome itself. Down syndrome carries increased risks of medical complications throughout one’s life, yes, but Down syndrome itself is not a danger. It is a uniqueness, a genetic mutation that represents both shared traits and endless individuality.

That’s why you should take the second synonym for “risk” in the thesaurus: “Possibility.” By that definition, Joshua’s life will be full of risks, in the best ways possible.

Help him to grow. Let him try. Lift him up. Cheer him on. Tell him he can do it. Tell him he’s smart. And never forget what you told your family when you announced that Joshua would be born with Down syndrome:

“We plan to raise Joshua with limitless expectations and limitless love.”

A life without limits is full of risks—possibilities. And you wouldn’t want anything less for Joshua.