The R-Word and the Courage to Say I’m Sorry

Penny had surgery a few weeks back. It all went well. But in the recovery room, as Penny slept, with her hair matted to her head, an IV dripping fluid into her arm, her nurse started telling us about how the doctors often give different instructions to parents than they do to the nurses. “So then I look retarded,” she continued. Peter and I caught each other’s eye as the nurse looked away. Was she aware of what she had said? Was she embarrassed? Did she wish she had caught herself? I’ll never know. Her shift ended a few minutes later.

Today is the annual “day of activation” for the “Spread the word to end the word” campaign. In honor of this day, I’m going to repost in full (with a few tweaks) something I wrote two years ago, and I’ll include links at the bottom to other posts related to this topic:

When Penny was three-weeks old, I was on the phone, telling the story of her birth to a friend. I had gone over all those details so many times by that point, it was a relief to ask her the question, “How are you?”

She talked about their kids, and then moved on to the frustration of having a husband who couldn’t remember to recycle. “I mean,” she said, “what is he, retarded?”

She kept talking, but I didn’t hear anything else. All I could think was, No. Your husband with a college degree and a Masters in History is not retarded. But my daughter is.

It happens all the time. I’m at dinner and someone drops a fork: “I’m so retarded!” Or, on a bus with a group of kids who are jostling, laughing, teasing each other: “You’re such a retard!” Or, listening to a speaker—a CEO of a Fortune 500 Company—address a roomful of high school students: “You have to remember that when I was a freshman in college I was retarded,” he said, in reference to his attitude toward members of the opposite sex.

The doctors who gave us the news that Penny had Down syndrome offered two guarantees: low muscle tone and mental retardation. Mental retardation. It’s a medical diagnosis intended to help evaluate a person’s ability to navigate the world. Ideally, labeling someone “mentally retarded” guarantees support—therapeutic, medical, social, educational, vocational support—from the community. And yet, rather than remaining within the clinical context, these words have become a casual term of self-deprecation and derision.

Spread the Word to End the Word has designated today as a day to promote awareness about the hurtful use of “the r-word.” At www.r-word.org, nearly 250,000 people have pledged to “support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.”

The Special Olympics has been criticized for trying to ban a word (see “The Case Against Banning the Word Retarded”), and plenty of people shrug their shoulders at what seems to be one more sign of rampant political correctness. And yet, language at its best conveys something true about reality. Early on in Penny’s life, we made the switch from calling her a “Down’s baby” to a “baby with Down syndrome.” Her existence as our child came first. Her diagnosis came second.

And when it comes to the word retarded, the same point holds. I could argue that my friend didn’t mean anything when she used that word to describe her husband. It was just a way to express frustration. She certainly didn’t mean to hurt us. But about a year after Penny was born, that same friend and I were having dinner. She’d gotten to know our daughter. She had heard about the joys and struggles and complications that can come with a diagnosis of mental retardation. At dinner, her eyes filled at one point and she reached across the table. “I’ve used the word retarded all my life, and I’m really trying to get it out of my vocabulary. I’m sorry for anytime I’ve said it to you.”

That was all I needed. Not for every word out of her mouth to become politically correct. But for her to want her language to reflect her understanding of the world, which included an understanding of our family. I needed her language to reflect her heart.

The Spread the Word to End the Word campaign is not about banning a word. It’s about caring for people. People who laugh and play and cry and struggle. People like our daughter. People like Penny.

If you want to help spread the word to end the word, click here for resources in that effort.

If you’d like to read more on this topic:

Movies and the R-Word

They Cheered for Me

If I Accidentally Say the Word Retarded

I’m Tired of Pop Culture Mocking Down Syndrome

The Limitations of Language

Finding the Right Words for Disability (on the her.meneutics blog)

 

 

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. If you read this post, use your social capital to end the word! Tweet to let others know that today is the day to END THE WORD. More at http://www.r-word.org/

  2. These stories are painful, but prove a powerful point. Thanks for sharing! A relative in my family has autism, and he is dear and loved to all of us. I think if everyone knew someone with different mental abilities than their own they would have a face to think of instead of using this offensive word.

  3. What a sweet friend you have to apologize…that does take courage. Your daughter is absolutely beautiful! I shared your post on facebook.

  4. Thank you for sharing this and for writing it so beautifully with compassion for both your daughter and your friend. A friend pointed me here today, knowing that, as a mama with two special needs kids, the word retarded used in a nondiagnosis context is often a raw place for me.

    Beth Woolsey
    Five Kids Is A Lot Of Kids blog

  5. Stanley D. Williams, Ph.D. says:

    This is very confusing. With no purpose of degradation, are you saying that the word “retarded” and “retardation” should not be used to describe a person’s mental capability, even if that person is not “technically” diagnosed that way by a medical doctor? Julie, this is political correctness. Why does it hurt YOU if (in your presence( I describe my friend as mentally retarded in a derogatorily sense regarding a personality trait. I can understand why it may hurt him, a brilliant artist who can’t remember his wedding anniversary. When it comes to being sensitive to his wife he is obviously “mentally incapacitated.” Is “mentally incapacitated” a phrase that’s acceptable? And if we use that phrase too much, will it too become politically incorrect to say? But how are you hurt? Your article failed to say, and I can’t figure it out. For you to state that your daughter, your lovely, charming daughter, is mentally retarded, is that wrong? You use the term, so it must be okay to describe her that way. My brother-in-law is mentally retarded, disabled, incapacitated (pick one). He use the word “retarded” in front of school groups he talks to. And I am quick to say that my sensitivity to my wife is often retarded. It is very retarded… as you are now no doubt thinking in challenging you on this issue. But the word accurately describes a mental state, with or without a doctor’s diagnosis. It is therefore appropriate to use in the English language. Now, your argument may have some foundation if you’re arguing that we be kind to one another and not cut each other down. So, I really would like an answer to my two questions since you’re a bright articulate young woman and a capable writer who uses words as her tools. (1) How are you hurt when others use the term? (2) Why is this not politically correct speech that stifles the meaning of words and morally appropriate free expression? thanks.

    • What exactly is your PhD in? Your question actually hurt my brain. If after reading this beautifully written blog you need to ask these ridiculous questions I’m going to assume you are a troll just posting for a laugh. Get a life.

    • I agree with Dr. Williams on his questions to you, Ms. Becker….how does using the word, “Retarded” or even “Retard” hurt you personally? I read your article. It is beautifully written. Yes, these words are ‘offensive’ and very derogatory and I personally have made the choice not to use them as a ‘descriptive word’ when referencing actions or others who forget things in a repetitive manner. My children have never used these words, my husband and I raised them to respect all people, regardless of their status…mental or otherwise. I have 5 children. One of my boys is autistic, although he’s high functioning, he will always be AUTISTIC. Should I campaign to have the “A” words removed from our lexicon and language base? I don’t think that would be a worthy cause, do you?

      • People frequently use the word retarded in reference to things, people, or actions that they do not like, or do not agree with. Rules that people don’t like are “retarded”, saying something hurtful without thinking is “retarded”, an appliance that stops working is “retarded”. Eventually, the word retarded becomes synonymous with unlikable, frustrating, broken, useless, and stupid, as opposed to meaning that one has cognitive delays. And then children with intellectual disabilities are told that they are retarded, the word that they learned from society means a whole slew of derogation terms. You don’t understand how this becomes hurtful? Medical diagnostic terms change as our understanding of the diagnosis changes. A doctor wouldn’t tell someone that they have consumption. Medicine today has a much more holistic view of disabilities. They understand that there are a number of distinct ways that people can be mentally affected by medical conditions. More precise language about the way a person is mentally impaired is useful clinically. Removal of the word “retarded” from our vocabulary, both medical and social, in exchange for more precise, articulate, and sensitive language is a very worthy cause.

    • Margaredarocks says:

      Because the term “retarded” has become a slang term with negative connotation it is time to replace it with words that do not carry all of those other meanings with it. Perhaps we could use words such as “intellectual disability” or “intellectually challenged”. As a mother with a child who has this intellectual challenge I am very aware of how often people,even close friends, use the term without thinking. It hurts me because use of the word “retarded” does not command the respect that the actual diagnosis should, again, because of the derogatory connotations surrounding it. What hurts the person you are describing also hurts those who love him, thus, why your friend’s wife calls his disability something other than “retarded”.

  6. Elainehayko says:

    I have read several of your posts and i am so touched by them. I am a pediatric homecare nurse and i love my patients and i am very offended by the r-word so much that in my house the f-word is less offensive and i have jokingly told my teenagers that. Thank you for your posts.

  7. Thank you for putting this into words. This is such an important point that goes under the radar.

  8. I so empathize with this post–I just finished your book A good and perfect gift and really loved it. And we all have our sensitive spots—in your book you mention the above incident with your friend calling her husband retarded and how it hurt–and while reading your book, there is a part where you talk about Penny on her first day of Sunday school and how the teacher enthusiastically remarked when you came to get her that ‘she listened just like all the other kids’. And in your mind you sarcastically remarked back how surprising that was, that she usually just sits in the corner and drools. Well, as a mom of a profoundly mentally and physically disabled young man….who is wheelchair bound and drools…that kind of stung. So we all react according to our circumstances. The world will always be a better place when we try to be kind to one another. We all say things that might be taken the wrong way, and we can’t go through our days worrying if every little thing we say might offend….but being sensitive to others and doing our best to show that our hearts are in the right place is worth the effort.

  9. Your comment, “we made the switch from calling her a “Down’s baby” to a “baby with Down syndrome,” caught my attention. It does matter how we phrase things.

    We adopted our son whe he was three weeks old. Like you, I never say, “He’s adopted.” I say, “We adopted him.”

    There’s a difference.

  10. Jamieandsue says:

    In the last year, I have studied for and received a professional designation called the Chartered Special Needs Consultant. I’m a life insurance agent who has been in business for over 30 years. In that span, we’ve had several friends with special needs children but, for some reason, have never gone deep with them, exploring the impact of that event (from birth “defect” to traumatic brain injury) on their lives, their hearts or their expectations. It just was something I never pursued with them. But in the course of these studies I have been overwhelmed by the way our society easily isolates families with special needs who are treated differently (or not at all in my case) socially, economically, even spiritually. It’s not intentional but, on the other hand, we’re not intentional about going the other way, reaching out in some way, either. Churches, for example, far more more frequently than not do not offer opportunities for SN families to participate. They’re not keeping them out, they just don’t invite them in by making it known that they are welcome and going out of their way to accomodate them. And this group has a special interest based in it’s founding charter (Jesus’s words around treating the least of these for starters) in attracting them.
    So, in my case, it’s had to be through a year long course that I was impressed enough by this isolation experienced by a large portion of the 53,000,000 Americans with significant disabilities to change my behavior towards them. So I understand the questions around PC language but I’m also here to say that it’s the sort of hurt that you need to get in touch with by getting out of your/our comfort zones and getting into it a bit to fully comprehend why language makes a difference.
    They say that parents are only as happy as their least happy child. When one of your children is set aside, out of the mainstream, all day every day, it might kind of get to you after a while. Language matters a lot to that person. It won’t change the world all by itself but it will make a difference to the way the person your talking to gets through that one day because you cared enough to change the way you address their child.


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