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:

1. “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.”
2. “Dude. It’s 2019, and that word is archaic and offensive. Get a dictionary and find another word.”
3. “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.”
4. “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.”
5. “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.”
6. “Friends don’t let friends use the R-word, so I’m stopping you right here.”
7. “Choose a different word.”
   
8. “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.”
   
9. “You sound really ignorant when you say things like that, and I know you’re not. Raise the bar, dude.”
   
10. “Have you been living under a rock? We don’t use that word anymore.”
11. “It surprises me that you’d use that word. You’re always so sensitive about the language you use.”
12. “Would you say that live on camera if you knew people were going to hear it and judge who you are by it?”
13. “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.

One of the great things about having a larger social media community is that people send you things they think you’ll like. It’s like having your own little army of personal shoppers, and there are numerous items in our home that were found simply because a sweet reader took the time to send me a link with “These rainbow tennis shoes have your name all over them!”

Because we have a child with Down syndrome, people also send articles and stories and news clips that pertain to special needs, and I love it. I feel informed and continually inspired by the constant stream of new stories people send my way about the great things people with Down syndrome are accomplishing, the breakthroughs in research that are being made to improve their lives and the new products, opportunities and advocacy that is happening within the special needs world. I’ve learned so much thanks to the links people send me, and if a story or product doesn’t resonate with me, it’s not a big deal–we move along.

Shortly after Nella was born, I wrote about the rite of passage all special needs families go through after delivering their babies–being e-mailed the Road to Holland poem 923,402 times by well meaning friends who don’t know how else to help (if you sent it to me, good for you–it’s a beautiful poem). I wrote how I felt about the poem which, at the time considering I was Stage 1 in acceptance, was “Don’t tell me I’m stuck in Holland–I’ll find a way to get to $#@*ing Italy with my daughter on my back, thank you very much.” I’ve softened since and, while I still firmly believe that having a child with special needs metaphorically makes you a dual citizen of both Holland and Italy and that you are not limited to just one, I recognize the intent of the poem and so appreciate the number of resources out there for families dealing with special needs in different ways. I’ve never been one to buy a chromosome slogan t-shirt, but we all take our corner in the advocacy ring, and we need all the bases covered. If wearing a t-shirt about Down syndrome is fitting for you, get on that base! I guess what I’m trying to say is that I’ve realized that just because I’m not into something doesn’t mean I have to be against it, and that we can change our minds about things whenever we want to. Which brings me to dolls with Down syndrome.

The first time someone sent me a link to a doll with Down syndrome, I clicked on it and frankly felt angry. It didn’t highlight the sweet facial characteristics we loved about Nella; it exaggerated them, making the doll an easy target for jokes. It was sold with the persuasion that your child with Down syndrome deserved a doll that looked just like her, but I thought all the sweet baby dolls in Nella’s room–the same ones Lainey played with–did look just like her. I found the suggestion that she needed a special doll, different from the ones her friends were playing with, offensive and exclusive; and I made a firm stance within that we do not believe in dolls with Down syndrome. I even turned down a generous sponsor opportunity with a large doll company releasing a doll with Down syndrome for Down Syndrome Awareness month, explaining to my media agent that the product was not a good fit for our family. When she e-mailed me back personally, commending me for turning the opportunity down if it didn’t feel right, she shared that she had a friend with a child with Down syndrome and would love to know more why it didn’t fit. I explained to her that the foundation of our special needs beliefs and advocacy was “more alike than different” and that marketing a different doll for kids with Down syndrome felt isolating and contrary to that.

Perhaps it’s the fact that we’re now almost nine years into this, and I don’t bristle as much at things (except, of course, things that we are required to bristle at–intolerance, injustice). Perhaps it’s the fact that we’ve had some years for doll manufacturers to perfect their art, thank the Lord. Or maybe it’s that as Nella grows, there are more obvious differences than there were when she was a chunky little cherub on my hip. As she recognizes those differences herself, I want to make sure we are celebrating them in a way that makes her so very proud to be exactly who she is. We can choose BOTH forms of advocacy: Down syndrome is just one little thing that makes Nella unique so we celebrate all the other ways she is like her peers AND Down syndrome is just one little thing that makes Nella unique so we celebrate the hell out of this amazing thing that makes her so very special.

So when an online friend, two weeks before Christmas, sent me a message that said “Did you see these?” with a link to a children’s shop in Australia, I clicked on it to find a video with the caption, “Look at these beautiful dolls with Down syndrome–we’re adding them to our shop tomorrow!”…and I fell in love.

I fell in love with the dolls that subtly capture in the most beautiful way those special little features we love. And I fell in love with the shop and the way they curated their products and the thoughtful way the dolls were being sold–wedged in between all the other beautiful dolls that had dark hair and blond hair and brown skin and white skin and Asian eyes and almond eyes–all photographed and categorized in this beautiful collection of dolls that celebrated all kinds of differences, no big deal. For the first time, I wanted a doll with Down syndrome for Nella, and I wanted it bad–so bad, I woke up early to make sure I could put one in my cart before they were sold out. I wanted to give it to her and tell her it was a special doll–a doll that had Down syndrome just like her so she could add it to her collection of all the other dolls that are just like her but know that this one shared something extra.

On Christmas morning, Nella was presented her doll as our family surrounded her, all beaming and telling her that the doll had Down syndrome–“just like you, Nella! Just like you! Isn’t she beautiful?” You should have seen her smile. She immediately took the doll, gently placed it over her shoulder and patted her back.

She carried that doll around all day, telling Lainey multiple times, “She has Down syndrome, Lainey. Just like me.” It was one small thing we could do to help her feel what we hope she is surrounded with her entire life–the message that people with Down syndrome are beautiful, capable and loved. And I knew she felt it holding that doll.

If you haven’t seen this video of the little girl with a prosthetic leg who finally received a doll made to look just like her, watch it. It’s a perfect example of what a powerful message of acceptance a doll can bring.

The doll company that makes our doll is Belonil, a company in Spain, but we purchased it from The Small Folk, the only company I could find that would ship the doll internationally.

I feel strongly about a lot of things both when it comes to raising a child with special needs and raising a child in general. But I’m learning to add the phrase “right now” to those feelings–“I feel strongly about this right now.” It helps me abstain from judging other opinions, allows me to recognize my strong feelings might be associated with current circumstances and/or pain and keeps the door open for change.

Oh, and the doll’s name? We all anticipated what Nella would name her being that she’s known for her creative Barbie names. I mean, we’ve got Pee Box, Paquel, Poop and Grocery Store sitting in the Barbie car right now.

But be still our hearts when we asked her what she wanted to name her doll and with no hesitation, she proudly answered “Nella.”