Language Awareness in the Special Needs Community

Language Awareness means thinking about what you’re saying

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?

Language Awareness defined

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:

  • Being aware, either through personal or learned knowledge, and focusing on the usage of words, their pronunciation, and the methods of combining them used and understood by a community.

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 hijacking of Language Awareness

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?

I do.

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?

  • Don’t insinuate that I am uneducated, since that is obviously not the case
  • Don’t assume that I just don’t understand what I am saying about or calling my kids (seriously, do you expect me to buy into that?)
  • Don’t assume that I am a thoughtless parent who cares not about her children’s delicate sensibilities.
  • Don’t ever, EVER, try and intimidate me with name calling and unreasoned arguments about your agenda.

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

Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
  • http://www.solodialogue.wordpress.com Karen V.

    I was interested to see what this was about but I'm confused being as this is my first time here. Is it that people actually have a problem with whether we say autistic child or child with autism? Really? I have not experienced this as a problem nor do I much pay attention to how I say it. It seems rather unimportant how we say the phrase unless for some reason unknown to me there is something politically incorrect about the either/or usage? I'd be interested to know more.

    • Katrina

      Karen, I understand your confusion because I was just as confused when I started reading about this topic. To answer your questions:

      * – yes, there are people who care whether you say "autistic child," "child who is autistic," "child with autism," or even "child who has autism"

      * – like you, I had previously not dealt with folks who cared how I spoke about my kids and though careful about wording from a personal standpoint I never worried about it otherwise.

      * – I think the underlying issue, as I pointed out, is one of language awareness, rather than blindly following proper syntax all the time – when I speak about my autistic child, I do so with love and humor, and a great deal of respect. That respect isn't lessoned because I thought of him as an autistic child instead of a child who also has autism.

      * – I tried not to attack any school of thought, but there is such a thing as politically correct disability awareness terminology – there is a growing trend toward what I noted was "People First language" which simply promotes talking about the child first, and their disability as a diagnosis, second. While this is a great way of respectfully talking about a child who has a disability, I don't think it's the only way to do so.

      Because I don't think it's the only way, and because I do sometimes say my son is epileptic or autistic (or insert any of their other diagnoses), I have been approached by folks who think I should know how disrespectful I am being toward my children.

      I 100% disagree, which is why this post was born. It actually makes me glad to know you haven't noticed this, because I have found it to be a growing trend and a somewhat disturbing one as well.

      Thanks for writing, and let's keep the discussion going!
      Katrina

    • http://www.lostandtired.com Rob Gorski

      Oh yes it's very real…sad…but real. I have been told that I must think of my kids as a disorder and not as a person because I said that my child is Autistic. Frustrating and honestly arrogant. Adult people with Autism WANT to be referred to as Autistic. Nicely said Kat… :)

      Karen read my post: http://lostandtired.com/2011/05/29/climb-off-your

      • Katrina

        So true Rob – and I think what is even worse is that parents are letting this slip under their radar, even if they feel like they are being attacked; even if they are feeling like their opinions don't matter.

        And that just isn't right!

        There's language awareness and using common sense respect and then there is using language awareness as a reason to attack others.

        I should note, Karen, that Rob's post is a great first-hand look at this topic as well.

        Have a great holiday, guys!

        –kat

  • http://www.chronicadmissions.blogspot.com Nancy

    I agree with you completely. I've often found myself caught up in whether I've said "special needs child" or "child who has a special need" or if I should say that my daughter "suffers" from cystic fibrosis. While I don't want her to suffer at all, cystic fibrosis does cause her to. And suffering isn't all that terrible. It sucks, yes…. especially when it is a child who is suffering. I would trade places with her in an instant. But suffering also makes us stronger, more faithful, and more grateful. I'm not going to try to sugarcoat CF by acting like it isn't something that affects every aspect of her life, because it does. In order to literally survive, she must accept it, own it, and live with it as a part of who she is.

    • Katrina

      Thanks for your comment Nancy. So true! When your kid has to deal with the unimaginable, what are you taking away from them by distancing them from this facet of themselves? They have learned and are stronger, determined, and more able, to accept this part of themselves if they can own it instead of denying it.

      Our kids deal with crap that they shouldn't have to. But they do deal with it. They aren't given a choice as to whether they have CF or CP or epilepsy or autism, only how they choose to deal with it and live with it.

      Thanks for sharing with me Nancy. I appreciate your candor!

  • http://www.specialhappens.com Gina

    Good post Katrina. I have found the language part around town too. I choose to say that my child has autism, has epilepsy and all the other diagnosis' because that's what he has, and not what I think defines him. I once asked an adult with autism what she thought…she did not like "autistic". In the end, I think it all comes down to personal choice. I don't get offended because someone uses another word to describe their own child. I, however, am not keen on someone using "they" a lot to describe a group of people…by a lot I mean all the time. It just rubs me the wrong way.

  • Katrina

    Gina – thanks again for commenting! Isn't it a little weird, as we talk about and advocate for our kids, others want to tell us how to do so?

    Personal choice is an important thing when you consider that we didn't choose, and our children didn't choose, to have whatever given diagnosis that they have; it makes sense that we should at least be afforded such choice in the language we use.

    I have a real problem with anyone, whether they have a disability or their child does, trying to lump all special needs kids and/or their families into one group, as if we all think the same about every facet of our varied lives.

    I appreciate your comments. Language awareness is one of those things we have to increasingly be aware of, and form our own informed decisions about.

    Still loving the EEG pic!

    Kat

  • Pingback: Autistic, Schmautistic - People First or People First Language? - Kat's Cafe()