on function

Earlier this week, I posted the following on Facebook.

I talk a lot here about why assigning functioning labels to human beings is pretty much crap. I talk about the fact that labeling a human ‘high functioning’ dismisses their very real challenges while calling another ‘low functioning’ dismisses their very real abilities – often along with their dignity and humanity.

It’s a lot more nuanced than that, of course. Most notably because so-called functioning levels are not a static thing, whether over the years as human beings grow and develop or from moment to moment, depending on their environment and the tools and support at (or not at) their disposal from one instance to the next. My daughter can be nearly independent in one space yet wholly reliant on others for survival in another.

Sadly though, the general public shows us time and again that it has neither interest in nor patience for nuance.

So how about this?

How about an autistic kid in my daughter’s class declaring to any and all who would listen a ranking of the kids in their program from highest to lowest functioning?

Please take a minute and read that sentence again. Slowly. And take it in. Think about what that sounds like, what it FEELS like, to my kid whom, incidentally, he decided was tied for lowest functioning in the crowd.

He’s parroting what he hears. He’s categorizing human beings – his peers – according to some completely contrived hierarchy because that’s what he sees society doing.

What does that DO to these kids?

I talk so often about how these labels and the ideas they represent affect the perception of our kids – how they color our ideas of what they can do, how and what we choose to teach them, how we allocate resources to support them, what we believe them capable (or not capable) of doing with the right tools.

But what about how they affect their perceptions OF THEMSELVES?

We’ve got to stop using this language.

It’s destructive. It’s divisive. It’s dismissive.

It’s crap.

Ed note: At a loss? Try, “needs more / less support” or “excels at X, needs help with Y” etc, etc, etc. There are unlimited words at our disposal. Let’s find some other ones.

*link added for this post

I tried to talk to Brooke about it. To find out if she’d been there when he’d said it, if she’d heard it and if she had, if it had held any meaning for her. I still don’t know the answers to those questions.

I knew I had to say something, but I didn’t know what. So I gave her some language. “If you hear people talking about functioning levels,” I said, “you can tell them that they aren’t a real thing and that ranking people isn’t ever okay.”

She said, “Okay,” but it was clear that my words were just words. I wasn’t sure what else to say.

Yesterday, I woke up to an email from an autistic friend. It wasn’t for me. It was for Brooke.

After reading it, I promised to show it to Brooke, but also asked my friend’s (and then later Brooke’s) permission to share it here. To save it, preserve it, to make sure that it would be here waiting for a time when Brooke might understand it very differently than she may now. And so that anyone else out there who needed her words could read them too. Because everything that I was trying to figure out how to say? It’s all right here.

Dear Brooke,

I heard about something that happened in your classroom the other day that made me really sad and angry on your behalf. It was about labels, and some people being labeled ‘high’ and others, ‘low’ ‘functioning’. I do not think that your classmate meant to hurt you – I think he was just repeating what other people made the mistake of saying and you know with our excellent autistic memories, we can quote people easily.

I want to say to you not that you do not have a right to feel sad or hurt – because you do! – but, quite simply, that whoever said that, in whatever context, was 100% WRONG. The dictionary says that functioning means “fulfill the purpose or task of (a specified thing)” and you, Brooke, you function extraordinarily well at BEING YOU and BEING BROOKE, and that is the most important thing in life because nobody else can be you.

You are extraordinary in so many ways, and not just because you’re autistic, but because you are clever and funny and kind. You work hard every day to function at 100% YOU, and you achieve it. You will never be like anybody else, and that is wonderful. Until they meet you, nobody knows that there is a Brooke-shaped hole in their hearts and their bodies, but there is.

Do you remember last Christmas, when you got me to sing happy birthday to Jesus? Do you think anybody else could make me do that?

I don’t believe in Jesus, Brooke! (I mean, I believe in your doll, it exists, but not in the deity of Jesus.) I’m an atheist! (this means I don’t believe in any gods.) Yet all it took was a few words from you and there I was singing.

Brooke, you are going to face many challenges in the years ahead. I will not lie to you, being a teenager is HARD. But as long as you keep on being you, you will find that the world welcomes you, loves you and cares about you, just like I do, and so many, many other people.

Love,

Your friend

That.

9 thoughts on “on function

  1. I never disagree with anything you write, but it is hard to completely avoid labels. Asperger’s, a label we lost, was a useful label – I could figure out if a program was aimed to meet the needs of my kid or not if it had that label. Yes, there is quite a range of “functioning” even within that label, but if we can’t use labels at all, it makes it more difficult to figure out which kids might match with which. My son would not be a good match for a group where kids needed communication devices. My son would not be a good match in a class where the kids were working below grade level academically. My kids’ school defines its population as having average or above IQ without any kids diagnosed with a learning disability, but have social emotional challenges and/or anxiety, and being college prep and doing grade level work, and they list a range of diagnoses that kids who might match there might carry. I hope that would not offend. The term “high cognitive autism” seems to have replaced Asperger’s – do you find that acceptable? It does not define overall functionality, just the most easily measured trait. I agree what happened in that classroom was cruel, and that ASD kids (certainly mine, though he’s never done it with people, just with like, contestants on American Idol) can be overly fond of ranking and poor at understanding the impact of their words, and that a kid with ASD and cognitive challenges could indeed have far better social skills than some Aspies. But we need some language to use, for practical reasons, that is acceptable.

    • Please note that I never, ever said (and wouldn’t say) we can’t or shouldn’t use labels.

      Autistic is a label and it’s one in which my daughter takes a great deal of pride and in the use of which I think there is a huge amount of benefit.

      Using a general descriptor of neurology is very, very different from the ranking of human beings by their theoretical levels of “functioning.” As Amy Sequenzia says in the post to which I linked above, Stephen Hawking is wholly dependent and cannot take care of bodily functions alone. Is he therefore low functioning? By many definitions, yes.

      As for “high cognitive,” I think it raises a whole other slew of issues related to that example in that there are a lot of assumptions made about the cognitive function of those who can’t communicate traditionally. And we’re finding out that they’re almost always wrong.

      The language that I use when describing my child is language that describes my child. I think we need far less shorthand than we think we do and that the shorthand really doesn’t describe anyone anyway.

  2. This is a lovely letter.

    Sometimes people ask me if Baguette is high-functioning, and I always answer them the same way–I start by saying, “I don’t know how to answer that question, because she has strengths and challenges just as we all do.” And then I provide examples of each, so that they get a better sense of who she is.

    I really don’t know what those labels mean. She’s good at some things and not at others. What does that add up to? The only answer I have is that it adds up to “Baguette.”

  3. I am a little embarrassed because I used to be like that kid who categorised everyone! Some of us autistic people like categorisation as it helps us make sense of a confusing world. Now that I am older (and I would like to think wiser), I no longer see functioning labels, I get to know the individual. My issue with function levels is people saying I am high functioning then assuming that I can, therefore, do everything… So often I don’t actually understand what people have said to me but I should have apparently!

  4. Pingback: When I say I am autistic | A Heart Made Fullmetal

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