Over break, I received this message from a middle school student:
Hi! I was wondering if you had any advice for me. I’m still in middle school, and there are a lot of kids who call things autistic or make fun of kids with Down syndrome. It is NOT okay, and I wanted to know if you have any tips for how to chew them out. Thank you so much!
I wrote her back, commending her on being a leader and thinking her response through and told her I’d sit down and make a list of different ways she can respond. I’ve been asked so many times how I react when I hear someone use the word “retarded,” so I figured this was a good time to tackle that one too. Unfortunately, even though it feels like we are in a more accepting age, people still make insensitive remarks, use offensive language and indirectly make people with intellectual disabilities the brunt of their jokes All. The. Time. But it often depends on who’s saying it and what setting we are in that determines how I respond. Is it a stranger or someone I know? Did I overhear it or was it said to me? Was it meant to be unkind or does someone well meaning truly not understand how it comes across?
I can tell you this though. From the day Nella was born, I’ve bristled every time something was said. Things that used to slide past me in television shows, words that maybe didn’t catch my attention in conversations before–they don’t go unnoticed anymore. If you accidentally said the word “retarded” when I was standing by, and you wondered later if I heard it, know that I did. I always hear it. It’s the rite of passage we inherit when we enter the world of special needs and are given the golden scepter–yeah, that’s what I’m calling it–golden scepter of opportunity. We get to love these people, and then we get to educate the world about that love.
Why are these words offensive? In the case of actually making fun of people with disabilities, I think it’s a given–you’re just an asshole, and it will catch up with you. Deliberately making fun of a marginalized group of people who spend their entire lives fighting for a sliver of the opportunities, friends, jobs and attention that naturally come easy for you simply because of the physiological coincidence that, up to this point (remember, anything can change), the cells in your body and mind have functioned in a way that makes things relatively easy for you–well, that says far more about you than them, and you’ll have to carry that and deal with it throughout life.
In the case of using the word “retard” or “retarded,” I still hear people argue things like,”Oh, come on; you know I don’t mean it like that” or “God, everyone and their politically correct terminology. Relax, it’s just a word.” Let’s talk about that for a moment. The definition of retarded means “less advanced in mental, physical, or social development than is usual for one’s age.” For years (although considered archaic terminology now), it was used to medically define people with intellectual disabilities. So whether you think you’re referring to them or not when you laugh at some absent-minded thing you did and say “how retarded,” you are. And it’s not a bunch of sensitive moms (although I’m proud to be that too) asking you to be politically correct. It’s an international movement backed by hundreds of thousands of people–stop using the R-word.
I didn’t always used to speak up when I heard the R-word or insensitive references to people with intellectual disabilities because I actually worried more about the feelings of the person saying it. “They’re going to feel awful when I say something” or “They didn’t mean it; they’re going to think I’m too sensitive.” But, do you know what? I DON’T CARE ANYMORE! I do not suppress something I feel passionate enough to speak up about for fear of what someone will think about me. And it’s 2019! I give people the benefit of the doubt that they want to be informed, that they’re confident and strong and open to learn ways they can be better. I trust they can handle it. And if they can’t? If their own ego and issues with being confronted or being wrong means they snap back or don’t agree, guess what? NOT MY CIRCUS, NOT MY MONKEYS! I did my part. I used my voice.
Young people, 2019 is a good time to speak up. This new generation has impressed me in so many ways, and more than ever, young people are using their voices and making efforts to make kindness and acceptance cool–to change our culture, to advocate, to include. And it’s working. No matter what someone’s response is, I promise you, you will stand out for someone who is kind and confident and a leader when you speak up for people with intellectual disabilities and make it clear that you don’t approve of intolerant language; and you will be respected for it.
Do I still have people in my life who use the word? Yes. And they’re good people. Most of the time, it slips and they immediately stop and say, “I’m so sorry. I don’t know why I said that. I hate that word.” It was sloppily used in everyday language for a long time, so I understand that it takes time for people to recognize how insensitive it is. Usually, if it’s a friend, I just smile and interject, “Can’t use that word, but go on–what were you saying?” And it works. We have had people we love continue to use it–people who I know are good and loving and care deeply about Nella, yet the word is still thrown around–“I felt so retarded”–like it’s no big deal. Keep speaking up though. Recently I had a deeper conversation about it with a friend who I finally interrupted.
“Can I tell you something?” I said. “You use that word a lot. And I know we’ve talked about it, and I know you say you don’t mean it to make fun. But I’m worried about the day that Nella gets old enough to understand it–and she will; I know she will. She’s going to be confused how someone she loves so much uses that word when she knows it’s hurtful to people like her. I don’t know how I’m going to explain that to her.” There were tears, and a long hug and a “Thank you for continuing to tell me. Thank you for giving me another chance to stop. I don’t ever want to hurt Nella. If you hear me say it again, say something.”
My sister was at a nice restaurant recently and overheard a table of diners use the word several times while they were enjoying their meal. As she was leaving, she walked over to the table and said, “I’m sorry to interrupt. I know you probably meant well, but I couldn’t help but hear the word “retard” used several times. I hear it a mile away. I have a niece with Down syndrome, and it kills me when people use that word as a joke. I just wanted to say something.” One of the men apologized and said he completely understood, one of the wives shooed her away with “Okay thanks, you can leave now,” but I bet they’ll remember the encounter. At least next time they go to drop the R-word, they’ll think about the woman in the restaurant who loved her niece.
All that said, I think it’s helpful to have prepared scripts when you’re advocating. Sometimes we don’t say anything simply because we can’t think of what to say. So I’m giving you some things to say today–a whole repertoire of responses for when you hear someone use the R-word or casually joke about people with intellectual disabilities. Whether it’s a friend or a stranger, said with intention or thrown out in ignorance–address it. Gently, firmly, seriously, with explanation or without. But please, say something.
Here are a number of ways to address it:
- “I know what kind of person you are and I’ve seen how much you care about people, so I know you didn’t mean to hurt anyone. But jokingly using the word “retarded” to refer to your lapse of thinking is so hurtful to people with intellectual disabilities.”
- “Dude. It’s 2019, and that word is archaic and offensive. Get a dictionary and find another word.”
- “I made a promise to myself to speak up every time I hear that word used. I used to use it too until I realized how offensive it is. Please find a different way to phrase that.”
- “Hey, you’re better than what you just said. Maybe don’t make amazing people who work so hard and struggle with being accepted the brunt of your jokes. You’re too good to sink so low.”
- “Can I ask you something? Do you know anyone who’s autistic or has Down syndrome? Because if you did, I don’t think you’d joke like that. I have a friend who has an intellectual disability, and he’s really amazing. He doesn’t deserve to be the brunt of jokes.”
- “Friends don’t let friends use the R-word, so I’m stopping you right here.”
- “Choose a different word.”
- “Volunteer with me at one event for people with special needs, and I dare you to talk like that again. They could teach you a few things. You will love them.”
- “You sound really ignorant when you say things like that, and I know you’re not. Raise the bar, dude.”
- “Have you been living under a rock? We don’t use that word anymore.”
- “It surprises me that you’d use that word. You’re always so sensitive about the language you use.”
- “Would you say that live on camera if you knew people were going to hear it and judge who you are by it?”
- “People with intellectual disabilities have enough challenges they have to face in life to be accepted. Being the brunt of your jokes shouldn’t be one of them.”
Addendum: I forgot one my friend Liz uses when friends forget and say it. She tells them that anyone who uses the R-word has to run a naked lap around her house. Game changer. I’m just sayin.
For me, it’s easy to address because I have a child with an intellectual disability who is my heart. It is easy to explain to people how much I love her and how much it would kill me to watch her hear that word, knowing it’s been used for years as a joke with an underlying punchline that says that an intellectual disability makes you lower than everyone else. Because that’s exactly what you’re saying when you use the R-word or make intellectual disabilities a laughing matter. Because of that, it is easy for me to advocate. To speak up over and over and over. And I only hope that all of you have the privilege of loving someone like Nella too.
Nominating you for the next Golden Globe!
I have a son with a brain anomaly, undiagnosed, but he can do nothing for himself and cannot communicate. Family members often use the R-word and it cuts to the core! But like you, I didn’t want to make a big deal or make them feel bad.
Thank you so much for this post, these responses. And for boosting my courage to say something.
Wow! This couldn’t have come at a more perfect time. My youngest son is autistic and just yesterday his older brother told me he hated a kid in his class because he called him autistic as an insult. I told him he shouldn’t hate him and that maybe he just needed some more information. I also said that he should of said “Thank you. I take that as a compliment because my brother is autistic and he is amazing…” haha. Probably not the best response but it was the first thing that popped in my head. These are all great ideas I can show him now. Thank you!
Oh my gosh, is there anything sweeter than a brother’s love? Melts my heart. Good boy, and great response mama.
Beautifully written…thank you for educating people and making them aware!
I have a great niece who has a form of dwarfism and she has some physical challenges…like scoliosis and has had her spine fused…we too are trying to educate people…please don’t stare…don’t use the word midget…
My great niece is going to have another surgery this month and we pray for a successful surgery. She is a beautiful person inside and out!
I love your family and especially your Nella…she is educating the world!
Thank you and God Bless,
Love, From Wisconsin
We are moving to a new house soon with a sweet, bright 5 year old girl next door who has Down syndrome. My daughter is also 5 (and sons 3 and 1) and I can’t wait for them to get the opportunity to get to know her and have a friend right next door. I’ve been scouring your site since finding out she has Down syndrome, I guess looking for specific ways we can connect with her and what I’ve come away with is just to love on her like any other kid and know that some things may take a little more time. Her speech is a little difficult to understand, but so is my three year old’s, so I’m certain my kids will have no idea she’s any different in the slightest. Any other tips for making our new neighbor feel extra loved and ways we can make play dates especially fun for her?
We actually had a conversation about this, my kids and I, as we were driving and my son quoted a kid from school who said the R word. I reminded him that we do not use that word. Its offensive and hurtful and not okay. I feel like it has unfortunately been passed down from my generation to the kids now as it was used so freely when i was a child and a teenager. Now that generation is grown up and they are using the word around their own kids. So thank you for sharing this because I’m going to use these suggestions to help my son be better equipped to say something the next time he hears that word from one of his classmates. He knows it’s wrong when he hears it but I dont think he knows what to say when it happens.
I love your wisdom and strength and how you share it with all of us. I am still learning to advocate for my child and still struggle with how the offending person might react! So, thanks for giving me tools to advocate and stand up to things I think are wrong.
I grew up using the ‘R’ word, mostly as an insult to my older brothers when we were fighting. My awesome Aron was born seven years ago. Now my heart skips a beat–in the worst way, like a mini heart attack–when I hear it. Unless it’s someone I know, I’ve been reluctant to say anything, assuming they don’t know any better. I think it’s time I start my education campaign. Thanks for the script suggestions.
Thank u. Giving my children these tools to speak up! I am a hearing impaired married mother of 2 young boys. I struggled my whole childhood being made fun of and trying to fit into the hearing world. As an adult I finally found my way, learned to love myself and learned to stand up to bullies. Now my children are hearing comments from other kids about their mom. Breaks my heart. I know at their young age kids just aren’t educated on differences, but bullying or gossip at any age is unacceptable. Taking charge and standing up for those w any kind of disability needs to start young.
I have a colleague whose sister has Down syndrome and she continuously uses the r-word. I’m at my whit’s end! I’ve corrected her, pointed out how insensitive the use of the word is but can’t manage to get her to stop, she says it just “slips” out…any advice?
Have you asked how she’d explain it to her sister? Make s deal with her that she has to drop $10 in a jar every time she uses the word and then donate the money to a cause for special needs!
Excellent idea!
Bravo!!
Bravo to your sister too.
I love when people stand up to such words or actions.
Stupid..fat..ugly..all words that should be abolished along with yours.
I love this post so much! I am 40 and my brother who is 47 is mentally challenged. Very different time back then, but from day one that word was not allowed in my house. My mom would call out anyone who used it. You could have said the F word and gotten a better reaction from her. I am the same. I usually say “the makes you sound so ignorant.” That makes most adults stop and take a step back. I have heard a few of my teens friends use it and I just interject and say stop, do not say that word.
I remember very distrinctly the day a friend in college called me out for using the R word. We had only known each other a few months, and I dropped it casually in a conversation without thinking about it. She calmly explained to me that her brother had Down syndrome and how badly it hurt her to hear that word. I considered myself “woke”, yet had never considered how much that word could and does hurt. I haven’t used it to this day, 10+ years later, and I call out anyone else I hear use it. I am forever grateful to that friend for calling me out when I did.
All the love to you and Nella <3
You and i are in total agreement about not using the R word and how destructive a simple word is. Thankfully, i was raised in a household where that type of word or humor was not allowed.
I am in disagreement on a word you use—taking God’s name in vain. It cuts me to the quick…just like the R word.
Thank you for listening.
Kelle u would love the episode 8 Life in LA on the show real life catholic. It is on Amazon prime. It is a beautiful episode that addresses people with special needs and their dignity.
Love your blog always!
As a fiercely loyal papa-bear to a little girl with DS, I love everything that you’re saying. I ask people – especially those close to us – “would you say that to Kylie?”
Shuts ’em right up. But it also makes them realize, and learn. Which is ultimately what will get the best results.
Keep teaching. Keep protecting. Keep fighting!
This is a great post! The words we use casually can be so important!
I am German and have very similar feelings when people using the word “nazi” flippantly.
Thank you for this ! I believe everyone should read this because it makes us that have friends or family members with intellectual disabilities feel stronger to be able to speak up to those who use the R-word !!
Thank you! I’ve felt at a loss for words with a friend and a best friend at that; mainly not wanting to hurt her knowing she’ll feel bad. I worry about her daughter hearing it and using it and this never ending. I want it to end. Thanks for the examples, they help a lot… ??
I don’t mean to minimize the word but this is just the tip of the iceberg. I have worked in Human Services for several years and unfortunately within the group home setting people with disabilities are not getting near the quality of care that they deserve and it is a constant uphill battle for the employees that really care and continuously advocate. I don’t think a lot of people outside of the field necessary realize how dire the situation often is. On a national level this really needs to be addressed and dealt with. How can clients possibly recieve quality care when employees are making the same wage as fast food workers? I don’t mean to deflect from the original topic I just think it is important that people know how serious of an issue this all is.
Well written, couldn’t say it better by myself. I always struggle to understand how insensitive humans can be. Especially those who use the word with derogatory purpose. Instead of just being grateful that its not them who got less lucky with their lives, they have to be a**holes without a reason. I hope by spreading this article, more and more people will get more aware of this issue.
My mom sent me this article so I decided to read it. I have an older brother with down syndrome and many times in my middle school I’ll over hear or be in a conversation with someone’s making a disrespectful regard or using “autistic” and the R-word. Sometimes I catch myself just giving them a look or walking away. Sometimes I’ll speak up and say hey don’t use that word u can use many other words. And other times I’ll try to ignore it. But after reading ur tips I feel inspired and I’m going to try and speak up every time someone says something hurtful. Thank you
Thank you for giving a range of possible responses. The only part I would nt use is ‘You will love them.’ I wouldn’t take the chance of predicting their response because they may well NOT love them. I could try ‘You might find them quite likeable.’
Thank you, once again, for giving me some tools to help the world around me grow and learn and change and do better.
Love and Peace,
Christi
I am a 5th grade teacher. Today, I was to begin teaching essay writing during our Writer’s Workshop block. I began my lesson with my intricately laid out plans and noticed the glazed over look on my students’ faces. They weren’t getting it. I was going on and on about seeing things in a different light, pausing to notice something you might not otherwise notice, thinking of things you’re passionate about… Still, the glaze continued. Suddenly, I remembered your latest blog entry and how it really resonated with me. I stopped the lesson and told them all about you, your family, your blog. I explained that the “R word” had always bothered me even though I used it sometimes when I was a child. They giggled and some of them acknowledged that they use it. I read your blog. All of it. They were hanging on every word. When I finished I said, “Now that’s an essay that was born from passion.” They were silent. Finally, one small voice spoke. “We get it.” Thank you for giving me the perfect vessel to not only teach my students about essays but the bigger and better lesson of realizing the powerful impact of our words.
You’re killing me. Thank you. Xo
I can’t really add to what the people above me have said. My wife can’t have children, so I feel very protective of the children of everyone else. There is a man who attends the community dinners at my church. I don’t know much about him, but I THINK he’s autistic. I’ve seen him drawing his numbers in the air. I want to speak to him, but I feel that he is my intellectual superior. I wish that I could see what he sees.
When I overhear this word, I just look the person in the face and say, “My son has an intellectual disability. What were you saying?” Then I smile and shut up. Amazing how that impacts the speaker.
I’d like to just say as a nurse, that word is still used on forms government and medical. My daughter is 34 years old and I have spent 34 years checking that box.
Remember language is always reforming itself and whatever word we choose to replace the r word with will become the new bad word. The new word used to make fun of our children.
Kelle, if you get the chance to go and watch this inspiring young man just do it, minus masacara!
Hope the link works!! https://www.facebook.com/323795057825632/posts/922310804640718/
I am a retired Special needs teacher.My mother used to tell people that I taught the retarded.I used to get so angry .Ito say that I TEACH CHILDREN.That was many years ago and I am happy to say that the R word is never heard in Ireland.I don’t like the word Autistic children either.I always children with Autism.
Kelle….
I do not have Instagram, so I thought I’d share a funny mispronounced word that my niece recently said….
Me…. ‘Tell Grandpa what your birthstone is, because it’s his birthstone, too!!’
My niece…. ‘Oprah!!’ {Opal} 😉
Peace out, Mary Lou
P.S. Ever since my now-adult ‘little’ brother, Michael–who has Down syndrome–entered our lives, the words ‘retarded’, and ‘retard’ haven’t been a part of my vocabulary!! Not that they ever were!! 🙂
Love this!
I work with student-athletes, and they will often throw around the r-word or use the word gay way to often. My go to way to address it is to stop them, and remind them they are college students and are much to smart to resort to using those words as descriptors. Then I tell them they need to come up with a different and better word, and will literally wait until they come up with something. Then we can continue the conversation. It’s amazing how well it works, and I’m noticing I hear those words less and less.
This is wonderful advice for any words that are harmful to people: gay, the R word, the N word, anything that is hurtful. I’m worried that there is a backlash against this, that we are getting too PC, I get very upset when I hear the we are too PC argument, that people should be able to say what they want, it basically is a way for society to be less empathetic.
Beautifully put, thank you! I struggle with this almost daily. I know that some of the people using the words are not intentionally being disrespectful, but still need to be made aware. I have a daughter who suffered a brain injury at birth so am also a little “sensitive” but the way that I explain it to my friends is that they are using the term as a synonym for stupid or useless, how would they feel if I referred to their child that way? They usually get the point. Thanks again for a well written article and for providing me with some alternative ways to correct people. 🙂 All the best to you and your family.
Very powerful explanation that I appreciate so much.The strategies for dealing with hurtful comments are especially helpful.
As a grandfather of a young lady with special needs ,I needed some positive feedback on how to deal with offensive comments.
Thank you.
I like the comment 1 lap naked around your house will have to use that one.
While it is important for people to not use the R word, isn’t it equally or perhaps more important to teach children with special needs (and, actually, all children), that they are not defined by a word? Yes, it is not appropriate for someone to use the R word (or other derogatory words), but Nella is not limited or controlled by someone’s use of that word to or about her. We are not defined by the negative words people use to describe us, so perhaps teaching kids to KNOW that that they have value and worth beyond what someone says about them will instill confidence and the ability to filter out the negative words.
I don’t personally know you, but from your blog, it seems like you do a great job at showing Nella she is special and unique and not defined by a diagnosis. Just thought it might be good to point out that she doesn’t have to have hurt feelings over a word – with guidance, she can learn to brush aside negative words because she knows inside that she is unique and loved and valued, etc.
I think we can respond to those who use derogatory words while also building kids’ confidence so they don’t spend one second contemplating whether the derogatory word actually describes them.
Just food for thought. I hope you and your family have a great week. 🙂
Yes! And I think that’s a given for families with kids of disabilities. I used to be of the mindset of not being bothered by the “R” word because of course we knew it didn’t refer to our kid, but it’s become an important topic of conversation to me since seeing it mean so much to this community and talking to so many adults with disabilities who have been hurt by it.
Beautiful post, thank you! My husband and I saw a billboard years ago that said “Take the Pledge” against the R-word. So now whenever we (accidentally) or others around us say the word we jokingly say “WE TOOK THE PLEDGE!” which always seems to open a non-threatening dialogue against using that word and corrects the behavior 🙂
I cannot tell you how perfect it is that you have written about this!!! Everything is very well put- AMAZING work!!!! :))))))
I had a manager who thought he knew all the lessons life could bring. He though he was amazing because he was 40+ years old, wife and kids -nonsense. Me being in my mid 20’s and no stranger to misfortune and hardships go about my business. As I’m working and him knowing full well my relationships with the disabled; he begins to start “jokingly” repeat retard over and over and over again in his attempt to humor a young late teen – in ear shot distance. So I call him over and ask “why are you making fun of people who are less fortunate than yourself”? He retorts “Your too sensitive”. I explain the difficulties faced, that he takes for granted. He exclaims “who are you to decide they have a hard life”? pretending to be smart. That skewed logic is superficial thinking at best. Disregarding his vein attempt to some-how convince me and undermined my logic. I simply asked “why”? is it that he needed to say such things. Catch 22 sucks for people who lack understanding. He knew either way he answered would make him sound stupid. Still not understanding, he went on to say “alright, I got it. I won’t say it around you anymore”. For someone pretending to be intelligent, just doesn’t get it. Quit soon after because of obvious retribution for me belittling him. There are consequences for everything in this world whether you do the right thing or not.
But what do you do when an Assistant Director of Special Education makes a comment using the “r” word in a pejorative way at a District Special Education Parent Advisory Meeting and does not immediately apologize. And then refuses to apologize when parents complain and emails that “can’t we just get pass this?” And none of the SpEd staff report it even though there is a zero tolerance policy against hate speech in the district. And a private complaint not mentioning the “senior level SpEd staff member” by name to district HR results in the complaint being forwarded to the offender to “investigate.” What would you do?
“Can’t we just let this pass” is common doubletalk when people can’t admit they were wrong. I’ve been on the receiving end of them myself. Others include “we’re getting off topic”, or “I don’t understand that question”. I for one would love to see the r-word dead and buried. I’ve known and worked with people who had Down Syndrome, Prader-Willi, Schizophrenia, and other things that made life challenging for them. Using a word like that objectifies them, and cheapens what they’ve accomplished.
This event was witnessed, so I would report this to the ADA. If this person does not publicly acknowledge wrongdoing, teachers at the school might think it’s okay to say that horrible word, and then they’ll lose their empathy for their students.
Thanks for the advice.I have a mentally challenged sister, and where I work they employ such special people. One employee has tried time and time again to make this women who is challenged, look stupid, tells other employees to clap when she returns from the restroom, she does frequent but all know her condition and it’s totally acceptable. Still people join in and clap. I’ve seen him many times go into her lunch and hide her drink etc. So I taken it on my own to give payback. I’ll tell the young woman about it and who was responsible, but she doesn’t really mind, because she doesn’t know he trying to make her look stupid. I would really like to punch him in the mouth, I call him ashole every day, and this man 63yrs old, has a medical condition where he frequents restroom five or six times in two hours.So the other day when he returned from the restroom, I gave him a standing ovation. He was not a happy camper, and he is still a asshole. He tries to tell her what job to do, he’s not the boss, he says sexual innuendos, where if said to a woman who gets it would result in harrassment. The people in charge know what going on, but to what extent I can’t say.I can’t help myself from trying to make this asshole working experience a living hell. He won’t stop, and neither will I. I always treat these wonderful people with respect. Ask advise, because of type if work we do they know more than I. I respect all woman and put them on a pedestal. Men on the other hand, lots of assholes.
Storytime: when I was eleven, I was in violin class, and our teacher asked us what “ritardando” meant, and I said it meant “retarded” and I started laughing. My teacher yelled at me, “THAT’S NOT FUNNY, BECAUSE THERE REALLY ARE RETARDED PEOPLE AND THEY REALLY DO HAVE FEELINGS!” After class I ran to the bathroom and cried for half an hour. After that, I came to see that it’s in bad taste to make fun of people with intellectual disabilities and call people retarded, but instead of yelling or shaming I make a case of using more polite terms such as intellectual disability, or if someone is making fun of people with intellectual disabilities or using the term retarded, I politely explain to them why it’s not in good taste to belittle people with intellectual disabilities, and that the term retarded is antiquated and there are better terms, both in literal and colloquial senses.
Thank you for the information. It is very informative.