Home » Language Awareness in the Special Needs Community
There’s a disturbing trend among disability advocates and even some parents. It’s a close-minded attitude about language awareness that has to stop.
I have been dismayed and hurt by some of the published material and propaganda out there regarding something I loosely refer to as language awareness.
Just what is language awareness?
According to Merriam-Webster’s Dictionary (11th Ed.), language includes “words, their pronunciation, and the methods of combining them used and understood by a community [emphasis mine].” My favorite dictionary defines awareness in multiple forms, but includes “having special or certain knowledge as from firsthand sources” and “focusing one’s attention on something.”
Combining the two words gives us a phrase, language awareness, and I define it using Merriam-Webster’s definitions as a guide:
This definition is important, because it gives us a starting point for understanding what we think language awareness is, and what others think it is about. For me, the idea of language awareness includes the idea that everyone has their own ideas and ways of saying things. As long as they are not being flagrantly disrespectful of someone or a group of people then I don’t think we have the right to dictate to them about how they should talk in all ways and at all times.
The problem with language awareness is that the idea has been hijacked by a few groups and individuals and has been forced, like a round peg into a square hole, to mean something else. I support many awareness campaigns out there, in whole or in part. The R-word campaign, for example, has my unfailing respect and support (you can read my post, here, about why).
People-First language, on the other hand, is a mixed bag for me. I agree, in principle, that effort should be taken to speak about the individual first and then their disability. The problem comes when looking closer at this school of thought, which is not the same as language awareness, but instead language awareness on steroids (with the aggression too!). The problem comes when you closely monitor and attack all wording, forcing everyone to speak and talk with a perfect kind of syntax (the child has a disability; Not the disabled child Or the child who is disabled).
In formal writing, I am more than eager to adhere to rules and syntax considerations in an approved and reasoned approach to using my language (why yes, I am an English major, is it showing?). On my blog, when I talk with or write to other parents, when I talk or write, personally, about my experiences or those of my family, however, I draw the line at being told what and how to talk about things which I consider myself the expert on–my family and my kids.
But Kat, you say, don’t you care about and respect your kids?
The problem with using a prescribed approach to talking about my kids is that, quite simply, it would have me put distance between my children and their disabilities. And my kids, while fighting hard not to be defined by those disabilities, have been irrevocably changed by them.
Bobby, Andy, and Logan are autistic – they own it and they earned the right to claim that designation. Bobby and Logan are epileptic – they have suffered (yes! that word!), almost died, and face daily challenges because of epilepsy, and they most certainly have earned the right to claim that disability as an ability. I could go on, they have many more diagnoses after all.
I won’t though, because the point has been made. To take the disability away from my kids, to separate it from them and distance them from that label, to pretty it up – is wrong. Disability is not an after-school special. These kids do live with these diagnoses every day, they are impacted by them, and those diagnoses have changed them.
They are not just kids who happen to be autistic, even though I sometimes say it exactly that way, because they are autistic children. Autism has redefined how they live their lives and interact with the world and people around them. And you know what, that’s okay to admit. Epilepsy has made our kids scared in an already scary world, it has taken control from them in a world already out of their control. The least they can do is own that diagnosis, to accept it, and to embrace it as a part of who they are.
Explanations aside, let’s talk about attacking this use of language
At the start of this post I said there was a disturbing trend, and I wasn’t lying. I and other parents I know have been verbally harassed because of the language we use about our kids. Read that again: our kids.
Please remember, I am a parent who has been through hell and back for and with these boys. My days are sometimes a very real nightmare. Have I not earned the right to proudly declare that my kids have been to hell and back, and we have too, and we’re still kicking?
I try to be respectful of others’ choices, I try to be aware of their choices, and when I am speaking with them, I try to respect them enough to use language that they are okay with. On my own page, in a private email, or when I am otherwise speaking as a parent, however, don’t I have the right to be afforded the same courtesy?
I included the dictionary definitions above (did you read them?). Notice what they don’t say. Nowhere does it say that awareness means adopting one, and only one, approach to a given task. Nowhere does it imply that language is about the needs of one (in fact it says “community”).
The fact that even Merriam-Webster’s realizes that communities adopt different patterns of language usage tells me something–they recognize that communities adopt different language patterns to suit the needs of their community. Don’t assume, for one minute, that the special needs or disability community is one disingenuous population. There are subsets of folks with different ideas and different reasons for thinking that way.
In other words, just because I don’t use language the exact same way you do does NOT mean I don’t have an awareness about why I use it. I’m beginning to wonder if I have given it more thought than many of the so-called experts.
This is a call to action from one parent to whoever else is listening out there – don’t make language awareness about only right and wrong, black and white, strict and structured. Language awareness isn’t about that.
It is, though, about treating others with respect. It does deem other viewpoints just as valid and respectable as my own. It’s about a reasoned approach, a thoughtful approach, to how you use language. If you can’t read past the way I use one word, or one group of words, then just how aware are you, really, of language within the disability world?
Is this something you have thought about? Do you adhere to a certain train of thought?
I would love to hear your viewpoints. NO attacking. Let’s open up this dialogue!
Please keep reading the perspective of another parent: Climb Off Your High Horse Already, by Rob Gorski
Stay tuned for my Next Post on Language Awareness, using the term “special needs”