These days, words and phrases referring to certain groups of people can be a complex and controversial topic. Though many of us have strong opinions about the “right” label to use, we often don’t agree on which label that is. Arguments on the subject can not only derail entire conversations, but also sever connections, making people too afraid or angry to speak to one another again. To make matters worse, instead of taking these differences of opinion into private or offline spaces, more and more people are chastising others for their language choices in very public ways.
I have come across this phenomenon again and again in the special needs community. Because of what I have seen, heard, and experienced there, I have developed my own personal belief system about labels.
My philosophy is this: If someone tells me the label they prefer for themselves, I do my very best to respect that. But I don’t simply assume that everyone who belongs to that group feels the same way. I also believe that the words we use are important, but not more important than our connections to other people. This is why I prefer to keep debates about phrasing and language private. And most importantly, I believe that if the intent behind what someone says to me is generous and kind-hearted, I want to honor that.
We are all entitled to our opinion, and you might disagree with me about some, or even all of this. You have every right to do so. But to underscore my beliefs and help you further understand my perspective, I’d like to share a personal anecdote.
Earlier this spring, I pitched an article about parenting a child with disabilities to an online magazine. The editor liked my idea and agreed to publish the story once I’d written it. Because I wanted to include a variety of perspectives, I decided to consult my favorite online parenting forum for Rett parents. I loved being part of this group. It had a warm, caring, non-judgmental atmosphere—unlike many of the other online parenting groups I’d unsubscribed from because of the petty sniping, unfeeling comments, and public scoldings.
I posted on the forum about the article I was outlining, asking for other people’s ideas and experiences. But what I got was…not that. Almost immediately, someone pointed out a label I’d used that they didn’t like. This person posted several YouTube videos made by other people who felt the same way. And that was all it took. The comments immediately devolved into an unwanted, chaotic mess, with everyone posting about the words and phrases they “hated.”
As I scrolled through the dozens of comments on my phone, my heart hammered, my palms sweated, and my thoughts became a whirling vortex of anxiety. My internal monologue went something like this: I’m a terrible person. I shouldn’t have said that. But I’ve seen that phrase so many places. It doesn’t bother me or lots of other people. How was I supposed to know it was offensive? If this is what happens when I ask for ideas, what is going to happen when I actually publish the article? There’s no way I can use a label every single reader thinks is correct. Whenever I write something, aren’t I just painting a huge target on my back?
Just then my spiral of shame and worry was cut short when the doctor entered the room and introduced herself. Oh, did I mention that all of this was happening at the office of a pediatric ophthalmologist? I pocketed my phone and put JJ in my lap, whispering words of encouragement as a bright light shone into her eyes. Twenty minutes later, my long-standing fears about my daughter’s vision were confirmed. JJ had CVI (Cortical Visual Impairment), a disorder in which the brain can’t correctly process what it is seeing. The doctor told us that JJ had a pretty severe version of the disorder. She was pronounced legally blind. My daughter, who couldn’t talk or use her hands, was going to need an eye-gaze device for communication. But even her eyes didn’t work the way they were supposed to.
I won’t go into how this new diagnosis made me feel. That’s not the point of my story. Instead, I chose this experience to illustrate how when we post something, we never know what’s happening on the other side of the screen. We might be taking to task a narrow-minded, ignorant person. But we could just as easily be making a bad day worse for someone who only had the best of intentions.
My online exchange not only took a terrible day and smashed it to smithereens, but it had other unintended consequences as well. It was extremely unhelpful, derailing what could have been a very fruitful discussion about parenting disabled children. I didn’t get a single useful idea out of the encounter. And because all of this happened very publicly, it also made me wary of posting anything else in the future. I haven’t asked for ideas on any articles or posts since. Though I learned more about a phrase that some people find outdated, the knowledge came at a very high price.
Our current obsession with labels feels particularly strange to me whenever it crops up in the world of Rett Syndrome. Ours is not a community where debates like these can ever be resolved. Nearly all people with Rett Syndrome are completely non-verbal, and though some use eye-gaze machines, these devices can be very limiting. Communication is always a struggle. In addition, most people with Rett are waging daily battles against seizures, scoliosis, gastrointestinal pain, feeding difficulties, mobility limitations, and other serious issues. Much of their energy is spent getting basic needs met and avoiding pain, not on semantic debates. Perhaps there is someone with Rett who has expressed a strong opinion about which label they prefer but, despite all my contact with others in the community, I have yet to meet them.
The result is that we—the caregivers—find ourselves in a linguistic free-for-all. There are so many phrases to choose from and no one to guide us. Should we refer to our loved ones as people with disabilities? Disabled people? People who live with disabilities? People with special needs? People with complex medical needs? People with different needs? People who are differently-abled? The list goes on and on.
Rather than wading into this chaos, I have now chosen to walk away from it. Since my post on the parent forum, I have given up trying to please everyone by finding the perfect combination of words. This is not only an impossible goal, but also a drain on my time, energy, and happiness.
Instead, I have created my own set of linguistic compromises. I vary the phrases I use when I write and have added a language disclaimer to my website. I have also settled on a label for my daughter that feels right to me. I often use the term “special needs” when referring to JJ. My daughter knows she’s different from other children in many ways, and there’s no use pretending otherwise. She’s too smart for that. But she loves hearing stories about her “special” equipment and “special” talents. It makes her smile every time.
I’m sure my compromises and beliefs about labels are not the same as yours. I’m equally as sure I’m going to offend someone, sometime, in some way, despite my best efforts. But I no longer want to spend my time focused on that possibility.
I also never want anyone to feel afraid of offending me—especially when it comes to talking about JJ. As long as others view her with dignity, treat her with respect, and recognize her for the special little girl she is, that’s all that matters. Because in the end, what my daughter needs from the people in her life has nothing to do with a label for her condition. Instead, it has everything to do with her value as a human being.
Have there been times when you have struggled with labels for the people in your life? What is your own philosophy about language?
Let me know in the comments below.