The R Word — It Is Personal

Rush is saying it. Rahm is saying it. Sarah initially said some can say it, and some cannot. Recently, I heard that Colbert is getting in on the fun too. It is an interesting issue to be talking about. Some people are tired of hearing about it. I am one of those people.  However, my mother’s heart has compelled me to talk about it one more time.

When my daughter was young, I tried to teach people why it hurt me when they used the word improperly. Along the way, I had some people tell me, privately, that I was overly-sensitive to the issue.  Some people debated with me in public. They also told me that I was overly-sensitive. So I decided that perhaps this was something I needed to repress. I came to the conclusion that I was being overly “politically correct.” I had taught my children it was wrong to use it as slang.  I had done my job.  I could not control the rest of the world.  Besides, I told myself, most people don’t mean it when they say it.

I went through a time, where I would try to convince myself, that hearing the words “retard” and “retarded” thrown around did not hurt me.  Besides, I did not want to be one of those who assault our freedom of speech. I tried to accept it as just a normal part of our society. I tried to forget about it.

I finally managed to move on, and just be quiet when it was used around me.

That was, until recently, when a national debate started.  It all began when Rahm Emmanuel said “retarded” in a meeting. Friends and family sent me the articles that were written about it. I read every argument in both directions.  I found myself reacting as if I was a mama bear with her little cub being attacked.  The wound was opened again.

Then I was informed that Rush began using it to make a point.  Again, my heart was pounding. I thought to myself, “Not this word. Please not this word. Use another word to make your point, but please not this word.”

Of course the comedians are always quick to jump in on the latest gaffe that is made by a politician.  Many did their part to highlight this word in their routine, saying it over and over again, while the audience laughed.  My emotions were on a roller coaster.

Why? For a silly word?

For some, yes, it is just a word. For me, it is more than that.

When MaryEllen was born they told me they suspected that she had Down syndrome. We knew we could accept this; however, it still was painful to hear this news. Any time your child is hurt, you hurt for them. Hearing the doctor share with us what this could mean to our daughter was jolting.  We needed time to learn about it and like any new parents, we were worried about what this meant for her future.

Eleven days after she was born, her diagnosis was confirmed. I was called by the doctor who gave me the news. Tears streamed down my face, as I soaked up the reality of this situation.

Two days later, I received her diagnosis in the mail:

CYTOGENECTIC RESULT: 47,xx,+21

Cytogenetic analysis of PHA stimulated culture has revealed a FEMALE karyotype with TRISOMY 21 in all GTG banded metaphases analyzed. The result is consistent with the primary form (nonfamilial) of DOWN syndrome. Some of the phenotypic manifestations of this are hypotonia, round flat face, simian crease, epicanthal folds, small ears, mental retardation, flat nape of neck, etc. Genetic counseling is recommended.

There it was, in black and white, my daughter’s diagnosis.

I could see it. I could see the little ears. I could see the simian crease on her little hands. I could see the flat nape of her neck. In fact, I found myself kissing that sweet little neck over and over, because it was so cute. I could see where she could have hypotonia. I could see the slant of the eyes.

What I could not see at this time was the mental retardation. MaryEllen was only 14 days old, and all I wanted to think about was my beautiful baby.  I just wanted to hold her and enjoy her during this time that she was so little.  However, those two ominous words kept popping up in my mind.  They were the words that I had to wrestle with the most.  At night, when everything was quiet, I would cry myself to sleep. My heart hurt. Those words would roll through my mind. “My daughter has mental retardation,” I said to myself through tears. It hurt.

In the quiet moments of my day, I wondered, “What will my daughter be like? Will she be able to understand fully what is happening around her? How “mentally retarded”, or delayed, will she be? Who will she be?” Yes, indeed, those were the words that cut deeply. They could have changed them to “cognitively delayed,” but I still would have to resolve to understand what this meant for my baby girl. Besides, that is not what they put on this paper. They used the words “mental retardation.”

I am a mom who does not give up easily. I battled my fear of these words by learning more about them. The first thing I did was look up the word “retarded.” This brought me new understanding.  Retarded, by definition, meant “slow to learn”. There, now, that is more like it. My baby girl would be slow to learn. That is much better. We all have areas in which we are slow to learn. I continued to educate myself by putting my hands on every book I could.   I was so inspired by parents who went before me. They taught me so much about the beauty and dignity of their children. I would cry as I read through their heartwarming stories.

Every day that passed I was more resolved to believe that my child was not her diagnosis.   MaryEllen would be MaryEllen no matter what anyone told me about what could happen. I was wrestling a giant, and I was winning! My daughter was my inspiration. Each day that she learned something new, she told me, “Mom, this was never about them anyway. This is about you and me!” She worked hard for everything she learned. Each milestone was amazing. We cheered her on when she started to crawl. We patterned her crawling daily, until finally she was crawling on her own. Later, after months of working on walking, she walked! I felt like I was watching the Olympics when her first steps came together, and she toddled into my arms! My heart raced with joy. It was an accomplishment like I had never had before. She was my fifth child, and I never felt like this before. Yes, I know what it is like to climb a mountain. I know what it is like to win an Olympic medal. I know what it is like to overcome an obstacle.  A part of me felt that every time she learned a new milestone.  That continues to this day! We never take one milestone for granted.

So how does all of this relate to Rahm, Rush, Colbert, et al? You see, it is personal. I spent many dark nights, crying over the words they are laughing about. They haunted me by day, and put fear into me by night. I had to learn their true meaning, and push forward to accept them. And I did! And so, when they use them so casually, to describe how they feel about people they do not respect, well, truly, it hurts my mama’s heart. It took me a long time to understand what these words would mean to my daughter. Yes, she is slow to learn. But she is more than that. She is a champion. She is a star. She is my daughter. If they want to know why those words hurt me, all they have to do is meet her, and they would understand. She is more than her diagnosis. But reality is, those words are a part of our life. They are sacred. They are ours, whether I want them to be or not. Those words did not win. We did!

We overcame the hurt caused by those words. We came to accept the diagnosis and my daughter became my hero. Please, think of her the next time you almost say those words. And on her behalf, don’t.

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  • guitarmom

    I don’t often listen to Rush Limbaugh, but my car radio happened to be on his station as he began using the “R” word. “Oh, oh,” I thought, “people are going to criticize him on this, and he won’t deserve it.”

    You see, when Rush Limbaugh went on his “R”-word rant, it was very, very clear that he was criticizing Rahm Emanuel for having used the word. He thought it was horrible that Emanuel said it. And, as only Mr. Limbaugh can, he drove home the point of the horridness of Emanuel’s language by pouncing and pouncing and pouncing.

    Then someone counted, and suddenlythe main-stream media declared that Emanuel “only” said it once but Rush said it 40 times. Never do you hear that Rush was pointing out how ugly and elitist Emanuel was; never do you hear that Rush was using satire to point out the coldness of the White House chief of staff’s remark.

    Diane — please know that Rush Limbaugh was actually championing your daughter.
    Personally, I didn’t like the satire on his part; I rarely do. But the MSM critisism being leveled at Rush both misses his point and seems purposefully obtuse. It’s as if the MSM wants to excuse Rahm Emanuel, and twisting Rush Limbaugh’s commentary allows them to. Perhaps there is some comfort that this is a tacit admission that Emanuel ought never to have made such an ugly utterance.

  • http://catholichawk.com PrairieHawk

    I worked for a time in the Direct Service business providing practical assistance to the mentally and physically disabled. I worked with folks with Down Syndrome, autism, and injuries. What came through the most for me was the common bond we shared through our humanity, how we were more alike than different, and how beautiful the souls of the disabled were. I couldn’t help but believe that these innocents were kings and queens in God’s sight. “Many of the last shall be first, and the first shall be last.”

  • http://www.mommylife.net Barbara Curtis

    Guitarmom -

    You are so right! I heard Rush that day also and thought his attack on Emanuel and championing of our children was brilliant!

    With four sons with Down syndrome (we adopted three after Jonny was born) I am a tireless advocate for our children.

    I deeply regret that the MSM lumped Rush in with the terrible Rahm E. in an effort to divert public attention on the real villain in this piece.

    Diane, I have already shared this with you privately and am glad to see someone else who has firsthand knowledge on this rather than secondhand reports by prejudiced sources.

    I would really appreciate it if you would change the first line in your article so as not to continue misrepresenting Rush. If we are asking that our children be respected for who they are, then we should be careful not to misrepresent others ourselves.

  • joanspage

    Why did Rush have to use it to criticize Rahm? Would someone who is white use the n-word to make a point against racism 40 times on the air?

    I have cerebral palsy and epilepsy. My cousin is retarded. The author speaks for me.

    If ever there were an issue where both left and right have been wrong, this is it. I defend no one who uses the r-word as an insult, even in jest.

    We, the disabled, are not going to fall in some neat partisan slot. I oppose abortion and euthenasia. But I also oppose cuts in state budgets that deprive the disabled of needed services.

    But this article is excllent. Thank you for running it.

  • cdyke

    Diane, thank you for the beautiful witness you and your daughter give. To use the ‘R’ word flippantly is quite simply an attack on the dignity of the human person, and God our Creator. The mocking of those with disabilities gets us one step closer toward a spirit of eugenics. Thank you for speaking up and helping build a culture of life and love!

  • Marcia

    Diane, Thank you for writing this article and sharing your journey. I, too, have a daughter, Sara Rose, who has Down Syndrome. She is now 15. I have struggled just as you did, when you hear the R – Word and have not been sure how to handle it. Your article is very helpful.

    Prairie Hawk:–You worded your comment so beautifully and it is what I so believe, after being on a journey for 15 years with my beautiful daughter, Sara Rose. Your words— “What came through the most for me was the common bond we shared through our humanity, how we were more alike than different, and how beautiful the souls of the disabled were. I couldn’t help but believe that these innocents were kings and queens in God’s sight. “Many of the last shall be first, and the first shall be last.”

    I know Sara has struggled with friendships in middle school and has felt rejection and loneliness and is sometimes not understood. (Just as Jesus experienced) Although, it breaks my heart and I do what I can to advocate for her, I think because of her experiences, she has developed a spiritual wisdom and maturity that sometimes amazes me.

  • megansgot47

    Please do not change a thing Diane. What a great article!
    It came from the heart and is perfect how it is.

  • Terri Kimmel

    I have a younger sister who is physically and mentally disabled. She taught me (and continues to teach me) so much about human dignity and what really matters in life. I figure most of what I do right as a mother comes from what I learned from being a sibling to my sister. Honestly, I don’t think people like the children described here have “disabilities” as much as gifts. Grace shows through them so brightly because it is not diluted by the same kind of self ambitions which “disable” the rest of us.

    I use the r-word about chickens sometimes (the ones raised in 6 weeks on hormones). I don’t use it about people because God doesn’t put qualifiers on ability or how fast we learn something. He values holiness.

  • shele337

    This is an absolutely beautiful article that hits right on the heart of this entire subject.
    In our day to day lives, we educate people constantly about this issue and also encourage people to see past the diagnosis and to the heart of WHO my children are. Since I have more than one child with Down syndrome, we often draw stares and curious questions from people who are honestly interested in our family. My boys are constantly educating people on their Ability and the fact that they are each individuals with their own unique personalities, things they are very good at and things that they are not so good at. I have had countless people get to know my boys and say, “I just never knew….”
    I am just as disgusted at Rush as I am the rest of them. It has nothing to do with politics…these are my children! I don’t care how you use the word….a lot of comedians call the hurtful things that they say “satire” too. Make your point. But don’t make it at the expense of my child!
    Thank you Di for sharing a piece of your heart. This is beautifully written and this mama agrees with you 100%…it IS personal.

  • csmom

    I love this article! Thank you so much for saying what so many of us moms feel but could never have expressed in the beautiful manner you did. I do not want to get caught up in what people meant. The fact remains that I heard the words and it was like a knife in my heart. There is no misrepresentation of the words that were said, and this is not satire. I do believe all 3 were wrong, but that was not the point here. This is such a personal issue as the writer stated. It cuts right to the heart for this mom I assure you. This issue was made to be a political one by the media when instead it should be about human decency. I don’t think you can find a more conservative person that I am, but my son is not a politcal issue – he is a little boy that should be given the dignity and respect that all people deserve. I hope that we will not have to hear about this issue in the media again anytime soon. I do hope this discussion will bring to light that it is never acceptable to use that word.

  • ibby

    I tried very hard to listen to Rush’s words objectively, instead of responding emotionally, which is my typical response when I hear that word. I do understand Rush’s attempt at humor/satire. I found it far from brilliant. As I have tried to teach my 11 children (the youngest does have Down Syndrome), when we use hurtful language, we stoop to a lower level. I am equally disappointed in celebrities when they do the same. The same standards for human dignity and decency must apply to everyone!! It is entirely possible to make your point heard without stooping!

    The point is very simple. If we are aware we are using hateful and hurtful words, we must simply choose different words!! In this case, we know it is hurtful to those with cognitive disabilities, and to those who love them, to use the R word. So just don’t do it!

  • ibby

    Please add this to my previous point. This point is important to me.

    Additionally, as I tried to explain to Rush and Stephen Colbert when I wrote to both of them this week, it doesn’t hurt quite so much when someone behaves badly and we consider the source. When Bill Maher mouths off and uses this word, I react strongly, but then remember to consider the source. When Rahm used this word, I was so personally hurt, but then I considered the source.

    However, it hurts much more when the hurt is inflicted by a friend or someone with which we feel an allegiance. It hurt me more when Rush said it. It hurt deeply when Stephen Colbert said it.

  • Xaviertrth312

    Hello Diane! Thanks for this article, it is very timely.

    I am also the parent to a little girl who has an intellectual handicap. I am angry that people with intellectual handicaps are scapegoated in our society time and time again. You know, if you get cancer, who are you going to blame, who are you going to sue? I am proud of you for comming around and deciding that no, it is not OK to use the R word, and you are going to tell us so. It’s all a question of how much you are willing to push, and I am pushing back too.

    This discrimination can be subtle and it is everywhere. I have also had to come around, but I am now proud to bring my little girl out and about, everywhere we go we are witnessing.

    In my book club, we read this horrible book about a mother who had a late term abortion because her baby might have had an intellectual handicap. And, then one of the next books reccomended was a Jodi Picoult book where having a child with a disability basically destroyed her family’s life. It was extremely difficult, I am not going to lie to you, I didn’t want to go, but I went because it was lent, and I thought I could do if for Jesus. I opened my mouth. And, when it is my turn I am going to suggest all books that have a disabled character and is portrayed in a positive light.

    Also, I generally like Rush Limbaugh. When Rahm used the R word, he was trying to be “cool” (as he is always so desperate to do). Rush was trying to make a point, even if it was crude.

    Thanks for the article and God bless you!!

  • Debbie Joplin

    I #1 offender of the misuse of this word is Ann Coulter. I have been on a campaign to get her to stop using the word for months… But she publically tweeted it AGAIN yesterday!!

  • http://www.facebook.com/robert.thornton1215 Robert Thornton

    What a well written post ! I get so angry when I hear people using the “R word” ! Then they usually say they “don’t mean it like that” and then I have to go into a 5 minute speech about how offensive it is and we need to eradicate the use of it as slang !

  • Bea Shafer

    Very well Spoken! I totally agree. My brother of 45 yrs old now has made me feel exactly what you are talking about, I am not his mamma, but I too felt the same when he took his first step, and at each n every milestone, he still amazes me.
    The R word when used incorrectly flys all over me as well and I have never really known why. So, Thank You! Thank you for putting it in to words so eloquently!!!

  • mommastuck

    Thank you so much for sharing ! I am a mother of 3 beautiful daughters, one has Down syndrome. She is 22 years old.I to hate to hear that word. I have went back to school and in my communications class I have to do a persuasive speech, and I decided 2 months ago that I’m doing it on ” Don’t use the R word”…. And this post has really got my wheels going on how I am going to do it… Thank you sooo much !!!!

  • Sherry

    My older sister was born with Down Syndrome in 1954, and was 10 years old when I came along. I did not get to see her learn to walk or reach other milestones. But growing up with her taught me SO much about kindness, perseverence, joy and also about how hurtful others can be – intentionally or otherwise. She passed away several years ago, but has left a legacy that has been passed to her siblings, and her nieces and nephews. Thank you, Diane, for putting into words what many of us feel!

  • http://www.facebook.com/SusanLordBaskin Susan Lord Baskin

    The tears are flowing…as I read the story I remember feeling every single one of those feelings as the mother of a boy with Down’s. He is nearly 32 years old and still a shining light to all those who know him. I am so blessed that God chose to give him to me!
    All I can say about the “R” word is forgive the idiots because they have not got a clue what we went through and probably never will. They will continue to say it and there is nothing we can do about it any more than we can stop the sun from shining. It is their loss and their ignorance – it is all on them. Yes, it is personal but they will never understand that fact.

  • http://www.facebook.com/teresa.marick Teresa Marick

    Thank you for writing this. My younger brother has Down Syndrome and I used to yell at other kids when I was young for using that word. It always hurt me and I was around 9-10 when the wound was wide open and salted. Like you, I repressed the feelings over time because it seemed useless, although I did let those close to me know I did not like the use of that word. They respected me and don’t use it.

    Thank you.

  • padgettmozingo

    Thanks for sharing this. As a mom of a 17 year old little girl with DS who is beating the odds – despite five surgeries and six months of life – I know these feelings. But our little girl is beating the odds too, and her doing so is exactly like winning a marathon each day. May God continue to bless your family.

  • Elissa McLaughlin

    Thank you so much for writing this for those that do not understand. I have a brother that has downs. He is 30 yrs old. People do not understand why that word hurts so much. Everytime I here that word used I correct the person even if I do not know them (or I just say end the ‘R’ word). This was written very well. Thank you for feeling as strongly about this as me.

  • Josie

    Your daughter is beautiful.. special… one of a kind… a gift.. no matter what the diagnosis is!

  • Irma Bell

    While considering this word, let’s not stop there. There is the neglected group of God’s creation that live with and experience the same type of hurt. They are those suffering from mental illness. Too many people use the words crazy, psycho, schizo, and similar words without considering the emotional damage done to these people. We all need to think before we speak.

  • Amy

    You have a beautiful little girl! Although I do not think that most people that use the “r” word inappropriately do so to inflict pain, you conveyed so well why it does. And you spoke from your heart, not in anger towards anyone. I know that for myself, getting to know kids with special needs and specifically with Down Syndrome has changed my usage of the word. I think as more people see your heart and get to know your daughter, you will change their perspective as well. And that is powerful.

  • shelia rodriguez

    I could not have wrote this any better. Thank you for putting into words whats inside my heart. This is me & my Olivia. Thank you.

  • stpetric

    Those who use “retarded” and related words as terms of ridicule or derogation are simply being cruel, and there’s no room for it in civil society. But — and I want to propose this as gently as possible — is it not more the problem that despite her hard-won accomplishments, it’s your daughter’s condition that’s painful more than the words used to describe it? “Retardation” was introduced to soften the hurt of the older diagnostic terms of idiot, imbecile, and moron. Change “retardation” now to “cognitively delayed,” and it will still be only a matter of time before coarse comedians and kids on the playground start using that for name-calling. It’s the thing itself that people stigmatize, not the term we use to describe it.

  • Diane

    Which is exactly what I said in the article. Changing the words would not have mattered. What matters is that people fling insults around with any words from the disabilities community. You made the exact point I made in the article.

  • Elizabeth Smith

    Wow! I’m also the mama bear to an amazing kid with that extra awesome chromosome, and this article is exactly like our story. It’s real life for us, and we are not at all amused by those who use our real life story as a punchline.

  • Kathryn

    Last year I had the pleasure to care for a little girl with down syndrome while her parents went to adopt her big sister. I had never cared for a special needs person before, and honestly I seen nothing different from any other child. She smiled, laughed, played with toys, we danced, and sang her favorite songs. Every child learns at different rates, even children within the same family. I enjoyed the time spent with her as I joke it is getting me ready for becoming a grandparent.

  • CFS

    But it’s interesting that you use the word ‘idiot’ which was the same in its day as calling someone a ‘retard’ now. The meaning and usage of words change. The kind thing is always to think of how something you say may hurt another person and then don’t say it. If you tell someone that using a particular word is hurtful to you and the reason why, perhaps they will refrain from using it. Or maybe not. Not all people care to be kind. Many people use words to shock, to offend, to get attention. That seems to be true in our liberal secular American society today. The attitude is I have the RIGHT to say what I want and if you are hurt or offended it’s your problem, pull up your big girl panties and deal with it. Sad.

  • http://twitter.com/waitingforshoet Hadenoughalread

    God bless you! I have two special needs brothers and people who think slinging those words around like confetti isn’t damaging and offensive need to be told, loudly, sharply and repeatedly!

  • Kathryn

    For anytime in the past I may have said “any” word without considering stories like your’s…. I am truly sorry. Thank you for helping me be a better person.

  • http://www.facebook.com/marlise.witham Marlise Witham

    Thank you for your well-written and much needed perspective. It breaks my heart when this word is misused or any being is diminished or dismissed so carelessly. Thank you for your message.

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