The language of disability can be difficult. Have you ever worried about how to refer to someone with one? Due to the anxiety that you might offend, have you, perhaps, avoided talking about it at all? I know I have.
In recent post of mine ‘An apology to my autistic students’ , was received very well. In fact, it has been read by over 40,000 people and shared over 10,000 times on social media. To everyone who read and shared: thank you. You are making the world my son will grow up in just a little more aware and, for that, I owe you my gratitude.
But with such a large audience, inevitably comes criticism. Since my post was shared on so many platforms, I have read hundreds and hundreds of comments about the piece – on the blog, facebook and twitter. The vast majority of it was positive and asking to share my words.
A few people, however, commented on my decision to call my son ‘autistic’, rather than describing him as ‘having autism’. To describe a child as autistic, they said, is surely to define him as such. It was an interesting and relevant point to pick out about that piece of writing. It is a debate that has been going on within the autistic community for some time. Some say they prefer the phrase ‘person with autism’ because it places the person first. Others say that autism is an inherent part of who they are and are happy to use the adjective. I can understand both perspectives.
As a teacher of English it is my job to analyse the layers of meaning in language, the connotations and associations that words can bring. My Year 11s would no doubt say that I have a tendency to ‘read too much’ into words.
If you type ‘autism definition’ into Google, this is what comes up:
A cold and scientific description that focuses on the can’t, the difficulty. It leaves out so much, as, I suppose, dictionary definitions must do.
When I was writing the article above, I thought long and hard about how to refer to my students, my son, for fear of offending anyone –
‘…has autism.’ The words stare at me from the computer screen, cursor blinking accusingly. Are those the words I want to use? Backspace…. autistic. Still blinking. I admit, I don’t feel happy describing my son as either of those things. He is my boy – clumsy, loving, funny. He is a skipping, singing whirlwind of wide blue eyes and quivering bottom lips that make you want to scoop him up and hold him forever. He is quiet, cautious, sensitive. He kicks his legs and shouts with glee when he sees buses. There are a million beautiful words that I want to put next to his name, next to that word, son.
But he is autistic. He does have autism. Maybe the problem is not the words at all. Maybe it is my attitude to them. Maybe it is society’s attitude to them. And when you consider the stark, clinical definition, and the fact that for many, that is as far as their understanding of autism will go, maybe my discomfort becomes clearer.
It is not the words that we use to describe autism, to describe disability, that are the problem; it is the barriers that society creates. If a person can’t do something in a world that is set up for those that can – well then that sets them apart. Makes them different. Turns them into a failure in a world full of successes. And whatever word you use to describe their difference, you are setting them up to be separate, other, less.
But we only see it as a disability, as failure to do something because it is ingrained in the world around us – not because that is what it is. It is the understanding and attitude makes the difference, not the vocabulary.
I think, in the end, I decided to use autistic more frequently in the article. It is an adjective like the millions of wonderful adjectives I could use to describe my son. And I am an English teacher; I like adjectives. Words have a prodigious power and we cannot take that lightly. We must be mindful of the ways others would like us to describe them. But far more important than words are the intentions and attitudes behind them.
If I were to sum up my son in a dictionary entry, a short phrase, would autism form part of that definition? Probably not. But it is an inherent part of him; it is an inescapable fact that it influences his thoughts and actions, who he is. The root of the word ‘autism’ is after all, auto, meaning self.
You can change the words – words for disabilities, diseases, disorders, syndromes. Words related to race, gender, religion. Words that describe, words that name, words that define and categorise. But until the world reflects the meanings that we want those words to have, until we are motivated by acceptance, understanding, and love – then semantics will always be secondary.
“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.” Martin Luther King, Jr.
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