I recently watched the new Netflix series, “Atypical.” I won’t go into a review of the show (though, in short, I found it relatable in many ways, despite disliking some plot lines), but I will mention one particular non-spoiler scene where the husband attends the autism support group with his wife (which he never has been to since the first time he tried and then quit.) The wife shared a story of their son, how she felt about it, and was applauded for sharing. Then the group leader asked her husband if he had anything to share. As soon as he began to talk, he was immediately called out for using the term “autistic.” The group leader informed him that they encourage person-first language, and then had to explain what that meant to him. He hadn’t intended to offend anyone as he was just trying to speak up for the first time. It was kind of a big thing he was there at all, and he was called out immediately. He couldn’t get through what he was trying to say because he kept saying all the “wrong” things. Parents were giving him dirty looks and shifting their postures in disapproval. It didn’t matter how he attempted to speak of his own son, none of it was satisfying to the group. Finally, his wife spoke up and put what he was trying to say in very dry, overly-politically correct terms… and was then applauded. The husband sat silent for the rest of the time (and likely never went back… Would you?)
It made me think—here was this parent of a child with autism, who was living this life with (a child with) special needs every day, yet no one would listen to him. His experience was completely invalidated simply because of the terminology he was using. No one could hear past their own defensive positions of what is now considered appropriate and correct. Now, don’t get me wrong. I’m not against person-first language, or (dis)ability-first language necessarily either. But can I be honest? I, the parent of a child with autism, am utterly exhausted trying to figure out all the right terminology I am allowed—or not—to use when speaking of my own son, especially with those who also live with individuals with disabilities.
I don’t think we really have issues with parents demeaning their children with the intent to demean them by calling them completely unacceptable names. It’s just that we’re so sensitive about the words other people use to define or describe their own lives, and that sensitivity, for better or worse, can cause some problems, or issues, or challenges, or whatever word you would like to insert here to mean what I am trying to say. I believe it’s safe to say that we are ALL on board with negating the word “retarded” from our language when referring to those with disabilities, or even something we are calling stupid that’s not even a person. I have heard the word used in academia and even in musical terms (“ritardando” is Italian, abbreviated “ritard,” which means to gradually slow down in tempo); there is no implication of any person or ability. It’s using the most literal definition of the word. Be that as it may, I don’t use that word and I honestly hate it and have a strong tendency to feel incredibly upset and offended whenever I hear or read it. I know we are all on the same page with being super sensitive to that word.
Despite the fact that I personally—and everyone else in the world of disability—want to “spread the word to end the word,” what if, when I hear or read it being used, I didn’t get immediately angry at them for using it? What if instead of being angry, I tried first to hear their heart? To hear where they are coming from? We all know there are those who may have not yet heard about ending “the word.” But that doesn’t mean they hate your child or think of them in the severely negative context with which it is now implied. It means we can gently educate and explain how that word affects so many people when used in the context of something being stupid, at the appropriate time. And even as we’re gently educating, keep a few things in mind as we do so (see “two things to note” below).
What if when someone says “autistic” or refers to a child as “a Down’s baby” we don’t let our defenses dictate our relationship with that person? There are gentle ways to have discussions, although I would proffer that Facebook is the least desirable place to have them, if at all possible. What if, instead of jumping to defense, we listened to what they meant and understood why they chose those terms?
I have a very dear, close friend who loves me and my son as her own family. We used to go to church together (we’ve since moved away), and she has worked with him in class, and had general interactions with him as we saw each other all the time. One time, we were talking on the phone and she was trying to tell me about something that had happened the previous Sunday. She was trying to tell me that he had a meltdown about something. As she described the scene and situation though, I could tell she was searching for words. “When that happened, he started to have … I don’t want to say fit, but I know it wasn’t a temper tantrum … meltdown? Is that okay? I don’t know the right words.” I laughed and interrupted her and said, “It’s okay. We use the term ‘meltdown’, but I knew what you meant.” She continued to explain that she didn’t want to use the wrong word and offend me, which I appreciated, but I really wouldn’t have been upset with her anyway because I knew she meant nothing by it. I would have still let her know what we preferred, but it would by no means have caused any damage to the relationship.
There are two things to note here:
- In this particular conversation, she asked me what she was supposed to say. She didn’t choose a word and then wait for me to correct her. But, sometimes people do that. Sometimes people don’t ask you what’s appropriate to use. And they don’t always expect (or want) you to correct them, nor do they always appreciate your correction – especially if it’s served with an incredibly defensive tone. Either way, give grace before admonishment.
- I gently explained what we used (as I think these types of things are largely personal and cannot always be dictated by others), but I knew what she meant. Give people permission to be wrong.
Giving Grace Before Admonishment
Don’t automatically assume that they are intentionally trying to hurt your feelings, or demean the value of your child because they said “fit” instead of “meltdown.” (Insert your own true-to-life examples here.) It doesn’t mean they are stupid or careless either. It just means that maybe out of all the words that were surely flying around in their heads as they attempted to say the right one, something not as right as the one you prefer came out instead. I think in general, people want to be kind and gracious. But if we jump on them every time they try to have a meaningful conversation with us about our child because they never use the right terms, they’ll quit trying to have any meaningful relationship with us and our family at all, just like the dad in Atypical. And let’s be honest—they’re not the only ones who get it wrong, right? Even we parents get it wrong … and WE “should know better”! And when we do offer our perspective on better words to use, let’s be gentle and not make them feel stupid or foolish. Which leads me to …
Giving Permission to be Wrong
On the tails of giving grace and being gentle in correction, also give permission. If the conversation allows, such as when they’re searching for the right word but are obviously unsure of what to say so as not to offend, go ahead and give them the words to use. But even if you can’t give them the words before they say it, and even if they say “fit” instead of “meltdown” or “autistic” instead of “your son with autism” without even flinching or giving any indication that they thought first before speaking, give them the benefit of the doubt. It’s how we would want to be treated, isn’t it?
Proverbs 19:11 “Good sense makes one slow to anger, and it is his glory to overlook an offense.” (Emphasis mine.)
First of all, even if it was the wrong word, did you understand what they meant by that? Sometimes it’s really not THAT big of a deal to necessarily correct. This happens all the time in regular conversation with my teenager (a word that may now be considered “agist.” He’s thir-TEEN, so I still call him a teenager. But I digress …) I’ll say something that very obviously implies a certain direction to my teen, then later when I check in on it, he says, “You didn’t tell me to do that.” My response is usually, “You’re right. I did not SPECIFICALLY SAY ‘wipe down the counters and sweep the bathroom floor,’ but, did you understand what I meant when I said, ‘Clean the bathroom today’?” Seeing that he’s not getting off on a technicality, he responds that, yes, he did understand what I meant, and he knows exactly all the duties included in that particular chore. But he tried to get out of it because I didn’t specify every single little thing he needed to do in order to clean the bathroom when this has been his job for the past 4 years. “It is his glory to overlook an offense.”
Going one step further than giving them the benefit of the doubt and letting something go because you understood what they meant by what they said, tell them it’s okay. I have told close friends, when they are searching for the right words, or when they re-state what they said, “It’s okay. I know what you meant. It’s okay.” And you know what? They usually give a little laugh of relief. They know I’m not the type to fly off the handle at one misspoken word—I’m too guilty of that myself to get upset at anyone else! But I make sure they know that our relationship is not going to break down because they said “autistic” or “temper tantrum.”
James 1:19-20 “But everyone must be quick to hear, slow to speak and slow to anger; for the anger of man does not achieve the righteousness of God.” (Emphasis mine.)
This may depend more on your relationship with this person, as this is more than likely something that close friends or families will experience, rather than a more casual conversation with a random person, especially on social media. Anymore, people understand – all too well – that if they say the wrong thing, they are bound to offend, and, sadly, that offense too often leads to damaged relationships. People are so quick to unfriend someone on FB because they didn’t like something the other person said. Let us “be slow to speak (or type) and slow to anger.” Even as I write this, you may well be thinking of someone you actually did unfriend, and you’re already crafting a comment of your reasoning for doing so. It doesn’t matter to me who you unfriended or why; however, that is exactly the posture of defensiveness I’m talking about. If we can recognize our own weaknesses to jump to defense, maybe we can better engage those in our lives who are desperately trying not to negatively engage us with offense and hurt our feelings.
I believe firmly that all of this is especially very important whenever engaging another parent of a child with a disability. We know the community we find together where we can talk about things everyone else inherently understands because they also live it. We don’t have to explain every little thing. They already know. So if one of them says something that maybe isn’t the most current PC term (as they seem to change day to day), let’s maybe give each other a little grace to be able to discuss our lives without worrying about how any word might possibly offend someone.
Then let’s continue living out this grace with those who are more or less “outside” of disability who don’t live with it—who don’t live with an individual with a disability—but desire to show empathy and to be compassionate.
Let’s give grace when they get it wrong, and even give permission to be a little wrong sometimes without penalty of death. How often were you yourself wrong prior to your current personal experience with disability? We won’t be able to survive without some humility, grace, and the setting aside of our soapboxes in favor of relationships with others. Most people learn better when the teacher is kind and gracious and gently leads them to understanding. If we let our defenses dictate our reactions, that type of overt response will likely shut them down and shut them out from ever attempting to participate again, rather than lead to any meaningful engagement of any kind and deeper relationships.
In the end, here’s what it boils down to: the best way to have meaningful conversation about disability with those within and outside of the world of disability without being offensive is to be the first to be slow to take offense.
Latest posts by Sarah (see all)
- How to Have Peaceful & Meaningful Conversation About Disability - October 27, 2017
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- How I Feel about My Son’s Autism - August 30, 2017