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We Need To Change The Way We Talk About Disability

I could call myself a recovering ableist.

02/06/2016 5:37 AM AEST | Updated 15/07/2016 12:53 PM AEST
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Semantics are a tricky thing in the special-needs world.

In the New Zealand media, a city mayor recently came forward admitting he had been wrong. He said he had been dismissive of the needs of Maori. He called himself a recovering racist. He asked for the people of New Zealand to think about their own actions.

Andrew Judd did something that I consider very rare. He not only realised the error of his ways, but he came forward and talked about it to the whole country in an effort to potentially change some minds. He admitted he had been wrong. That's no small thing.

But on the whole, he didn't receive applause or slaps on the back. He was persecuted for his efforts. People spat on him and the depths of New Zealand racism were revealed in all its insidious ugliness.

I'm not here to talk racism. There's much I could say, but I could never do it justice.

This is a post about ableism.

While Andrew Judd admitted to being a recovering racist, I myself can admit, although painfully, that I could call myself a recovering ableist.

It wasn't that I hated anyone in the special needs community. Far from it. It wasn't hate that I felt when confronted by disability and special needs, it was pity. It was a self-righteous belief that I knew what was important for a good life, and that disability or special needs did not fit that blueprint. It was the idea, so deeply imprinted in my mind that I would have defended it without a moment's pause, that living with the kinds of special needs that my own daughter Eva had, would make life not worth living. The idea that what I considered "normal" was the only way to be happy.

I was a person who used the term "retarded" without question or qualm. Not on a daily basis, but often enough. I rolled my eyes when the Black Eyed Peas were forced to change their lyrics to "Let's Get it Started". I saw no harm in it.

While I recoiled when someone yelled "that's so gay", or joked about the 'N' word, when it came to the 'R' word, I would internally justify its use by reassuring myself that I wasn't referring to actual people with disabilities. The fact is, the 'R' word does just as much damage as the other insulting and derogatory terms aimed at other groups, but I didn't extend the same respect to the special needs community as I did to the others.

Just after Eva was born, I remember thinking that I would have to think about my language -- but it wasn't out of rage at it's use. It was because I realised I would soon be surrounded by this community in a way I had never been and I would need to fit in.

In a few short weeks though, I woke up to my attitude. I realised I had been seeing the world in a very binary way. I couldn't see past what someone did for a living, or what education they had. I couldn't see someone's worth beyond their contribution to the economy. I didn't think about it quite so blankly, but that's what it came down to. I couldn't see the value of a life like Eva's because all I saw was isolation and burden and disability.

I saw the deficits and the differences and none of the beauty and brilliance. I saw a life without music and reading and communication in the way I knew. I saw life in a wheelchair, no walking or running or jumping. I saw this all, and I saw none of the things she would see and experience. I didn't see the beauty and love she would inspire in the people around her. I didn't see her ability to find ways to communicate, even without sight and hearing. I didn't see her joy in touch and how even the simplest swirl with a finger on her forehead would bring just as much happiness as my voice could to a hearing child.

Of course, I can only write this because I now see those things. I saw them all, just in time, before Eva left me forever.

Before Eva came along and slapped away my ignorance, I saw life as being about certain things, and when disability prevented those things from happening, I felt pity. I saw doors shutting. I never considered that she might not want or care about that door.

I don't see the world that way anymore. It's as if my whole life I had the wrong prescription in my glasses. The world was a blur, awash with preconceptions and assumptions. But now I can see the individual leaves on the trees, and I see how powerful words are, and how when you have every privilege it's easy to roll your eyes when a group seems to be up in arms over one word in a song. It's easy to say, "it's not about you". But it is. It always was.

Now I know what it feels like to be the voice for someone who does fit into those categories. I am the mother of a daughter who had a condition, CHARGE Syndrome, where the R stands for "retarded growth and development". It's a medical term, but when you see it attached to your child, every time someone says that word, as an insult, a joke, a song lyric, a passing comment, it stings. When it's yelled across the room in anger, you feel the vitriol attached to those letters and a little bit of you collapses.

I've heard people talk in the way I used to talk. They say, "one step at a time". They'll correct themselves when it's an issue of sexuality or ethnicity, but when it comes to special needs they give themselves a free pass. Why is that? Is it because there are so many in that community who won't confront you outright, or maybe can't confront you?

Do we assume that it's a safe dalliance in prejudice? A victimless crime or at least a crime where most of us don't have to see the victim who's affected?

Do we assume it doesn't hurt? Or do we just not care?

Semantics are a tricky thing in the special-needs world. It feels like every few years the language changes because the previous choices now have negative associations. I think it's important to respect the feelings of those affected. How hard is it for us to change our vocab by a few words? Is it such a hardship and blow to your freedom of speech to cut out a few phrases, when there are plenty of words you can replace it with? Get a thesaurus if you're feeling desperate.

But another part of me thinks that if special needs and disability was really respected and valued in this world, we wouldn't need to continue to adapt our language. The words we use wouldn't start to be loaded with negative connotations from the first moment they are used, because there would be no negative connotations for them to absorb. It's not the words that are at fault here, it's the world which attaches negative meaning to any word used to describe someone in the special-needs world.

Even the words "special needs" are now under scrutiny. They feel so perfect to me. Eva was special. She had some needs, alright, and she was special. But even now, we can use "special" as an insult, and people will know just what we are getting at. Soon, there will be something else used to describe our children. Special needs will be dirty words and we'll create something new to define this part of humanity.

The problem isn't the words, it's us.

In saying all this, we don't live in a world where everything about special needs is accepted, so the terms and phrases and words we use to describe it do matter. They matter to the people within the community, and they should matter those outside it. It matters when you use the 'R' word to describe someone you don't like. It matters when you use it to describe someone you consider stupid or unintelligent. It matters when you use it because every time you use it, you're telling my daughter, and other people who have extra needs, that they matter so little to you that you couldn't take an extra second to find another word in your vocabulary to describe this insignificant moment.

It matters because you chose that word, when there are so many others that would suffice, and it doesn't mean anything to you, but it means so much to so many. And you choose it anyway.

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