Dear Parent of a Child With Down Syndrome, Let's Stop Shaming People for Not Using 'Person-First' Language

Some days I get so bent out of shape when I read things online. I try not to take it too seriously, but I don’t always succeed. I want to stand on the rooftops and yell to everyone, “Please stop being so demanding, so imposing, so unyielding.”

General, everyday conversations are more complicated than they used to be. There is so much, “Don’t say this; don’t say that; good grief, never, ever say that!” It can make even an extroverted person clam up and shut down. It happens to me. I have a child with Down syndrome and I don’t know how to strike up a conversation with a stranger who may also have a child with Down syndrome. Why? Because I don’t want that parent to post in her support group: “Ya’ll, you will not believe what happened to me today, this woman, who clearly had her own child with Down syndrome said to me, You have a T21 child too! Uh, yes lady, my child has Down syndrome, but maybe you want to comment on how cute she is instead of bringing up her diagnosis. And really, get up with the times and use person-first language. You’d think she would know better, really we need to educate people in our own community about the correct way to speak.”

You think I am exaggerating?

I wish I were. But, I have read these types of comments on more than one occasion and it hurts my heart so much. Moms are forces to be reckoned with, especially moms in our community, as our sensitivity levels are heightened, and we can be fierce and at times, even harsh — too harsh. It seems it’s easy for one mom to shame another mom when she feels there is a righteous, self-defensive nature to it. Many of us have been guilty of this at one time or another, I know I have been. But, we have to do better. That behavior doesn’t bring about anything positive. In fact, it’s a barrier to meaningful communication and hinders the development of relationships.

Often, I see memes going around the internet about all the things you shouldn’t say to parents with disabled children. Then, a slew of comments from other moms shaming people for doing these things, like they should know better. To be fair, it’s not the memes that get me riled up — memes are supposed to be funny, inside jokes, sometimes a bit self-deprecating. They can be a cathartic, comical way to blow off steam with the people who get where you are coming from. That’s all good. But, it’s the dead serious comments about the memes that upset me.

Many of the things that rub a parent of a disabled child the wrong way are innocently said. Here’s the thing though, people don’t say things to a parent to be a jerk, they say it because they don’t know what else to say and it is their way of offering support and admiration.

My response to a comment like, “God gives special kids to special parents?” “Thanks, we were perfectly matched! I learned that from a friend many years ago, that children are perfectly matched with their parents, and boy do I agree.” I’m not going to get my panties in a bunch about that comment. I am not going to “educate” that person. I am not going to post things on Facebook telling people that it’s a backhanded compliment and offensive and all the parents of disabled kids hate it (by the way, they don’t all hate it). I am not going to sarcastically respond, “I wonder why God doesn’t think you or your kids are special, huh, Stacy?”

Why?

Because, I have been through hell and back as a parent of a disabled child and as a grieving parent and I don’t have time for that level of nitpicking negativity in my life. Really, do any of us though? Well, I believe we shouldn’t.

People in my own community are making me feel like I am wrong, less than, like I don’t belong because I don’t think the way they do. Listen, we can have different opinions and still like and respect each other. But, what I have been experiencing lately through online outlets is an undertone of unyielding expectation that people should think the same way about things, like person-first language for example. And, if they do not, they are considered disrespectful, uneducated and wrong… insert eyeroll emoji.

The more I see that type of expectation, the more I see comments disparaging people who are not meeting that expectation, and the more I see there is no wiggle room for another way of thinking — the more I feel somewhat alienated from my community. And, correct me if I am wrong here, but aren’t we trying to promote inclusion? How can we promote inclusion and foster an ease in communication when we are contributing to the barriers that keep us in silos by having inflexible expectations of others? We can’t.

I am not angered by every well meaning, awkward, perhaps inaccurate comment. I don’t demand that people use person-first or identity-first when speaking to us or about my child. I don’t think I am the only parent who feels this way either. My only expectation is that people lead with openness and good intentions.

Though I yearn for creating relationships with more parents in the Down syndrome community, I don’t do it. Isn’t that heartbreaking? They are my people, I shouldn’t be afraid of them. But listen, I am terrified to approach other “Lucky Few” parents because I am nervous I will say something “wrong” and offend them. I clam up when I am in group situations with other parents who have disabled children for the same reason. I feel like I have a lead weight in my stomach, I get sweaty and nervous when the conversation gets to things like, “I hate when people strike up conversation using Down syndrome right out of the gate” or, “I hate when people say, ‘they’, ‘them’, referring to all people with Down syndrome” and, “My child is not a Down syndrome baby.”

If I am not approaching other parents who have kids with Down syndrome, and I am walking along the same journey, how the heck do people with little to no experience with Down syndrome feel? I can imagine they are nervous and choosing avoidance, too. And
that is a shame. It’s a shame that interactions are stifled before they begin for fear of offending someone.

More than being nervous to approach others along my journey, I am feeling suffocated by the many posts demanding person-first language, they are making me feel like I’m a bad parent of a child with Down syndrome. These posts are insisting that I fall in line with person-first language, they are strict and clear in their expectations to use it and to promote the use of it to others. They intone that it is the only way to speak about people with Down syndrome. They say things like, “Down syndrome doesn’t define my child.” They blame the lack of use of person-first language on a “generational thing.” What they aren’t getting is that it’s just not that simple, nor is it the language many actually disabled people prefer.

Establishing new relationships, having meaningful interactions and even just trying to brighten a stranger’s day with a smile and a nice comment, aren’t so easy in our current environment. It shouldn’t be so hard. There are plenty of legitimately hard things we have to do in this life, communication shouldn’t be one of them.

Person-first language is not a right or wrong, it’s a preference of speech. I truly feel that more people in our community need to start treating it that way. Every cell in my daughter’s body has an extra 21st chromosome, for me, it does define her, along with many other things, but it should never, ever limit possibilities for her. I feel like people get those things confused, they think that by saying Down syndrome defines a child, it limits a child. That’s not the case. Down syndrome is a part of her as much as her blue eyes and her auburn tinged hair; it should not limit her any more than her blue eyes and her auburn tinged hair does. My child is a Down syndrome child, a T21 child, a child with Down syndrome, a child with Trisomy 21. I use the words and where they fall in the sentence interchangeably. I should not be shamed for doing so.

Person-first or identity-first language? Neither are wrong, the preference is made by the disabled person (or their advocate until they can decide on their own). If you know someone prefers one over the other,  follow their preference. But, ultimately, the most important thing is that you are speaking and acting with good intentions, that you are recognizing the possibilities in that person, and that you do not use the diagnosis as a reason to limit the person.

We should not be posting ultimatums about language. Ultimatums about intentions, yes, absolutely. All. Day. Long.

But, language isn’t what drives intentions. Intentions drive understanding, regardless of the words.

If some jerky guy uses person-first language and says, “So, your kid was born with Down syndrome,” and he uses inflection and disgust in his voice, maybe even a snicker, his intentions are clearly negative. We parents of disabled kiddos like to throw around the word, “educate” a lot. So, perhaps this is one of those teaching moments. Maybe you want to go ahead and educate him, but if he’s that ignorant, you might rather not waste the energy.

But if a mom with an adult child who has Down syndrome uses identity-first language and says, “You have a Down syndrome baby,” and she lights up like a Christmas tree and smiles as though she found a kindred spirit, her intentions are clearly positive. Please, let’s not educate this woman and snuff out her light, it really isn’t necessary, this shouldn’t be a teaching moment.

What I feel is so important, is that we recognize there are people within the disability community who prefer identity-first language and those who prefer person-first language. We may not agree on our preference and that’s totally OK. But, what I am fairly sure we can agree on is that we don’t want our children to be limited or treated as less than. We want the people who interact with them to do so with the best of intentions. This is how we should be blowing up the internet with our posts, not by a micromanaging the words people use.

If we want other people to be open and welcoming, we have to be open and welcoming, too. I saw a good quote on Pinterest the other day from T.D. Jakes, “We have the tendency to want the other person to be a finished product while we give ourselves the grace to evolve.”

When we feel that someone is interacting with us with an open and welcoming heart, let’s challenge ourselves by asking, “Do I really need to ‘correct’ this person? is he really even ‘wrong’ or is he just using a different language than I use?” But, let’s educate ourselves, by recognizing that the disability community is large and has deep roots and with that size and rich history, language preference will not be the same across the community — but the expectation for good intentions will always be the same. Let’s zero in on that common belief and make more positive and meaningful connections as we do it.

We shouldn’t be afraid to approach other parents in our own community for fear of offending them. Others shouldn’t feel afraid to approach people in this community for fear of offending us. We have too much to gain from each other to be afraid to communicate.

My ultimate goal is to teach my child self worth, self assuredness and self respect in a world where others may not value those things in her or in themselves for that matter. I want her to appreciate the goodness in those around us and I want to teach her how to differentiate the good intentions from the bad (a lifelong lesson, really). I hope to break down the barriers of communication by extending grace, leading with love and an open heart and mind. I want to foster my child’s relationships within the Down syndrome community and the world outside of it, but I can’t do it alone.