In the world of social justice, language is important. I consider myself fairly woke, or if I’m honest, in a continuous process of waking up, and almost daily I learn something about the language I’m using in reference to disability, mental health and ableism.

I thought I had the disability language down. I thought I knew which words to avoid, and which to use, but I also know that language in these contexts evolves. What once was a common term or phrase, is now outdated and offensive. Through use, over time, these words collect negative connotations, and become derogatory, and a new word needs to be found and claimed and owned. The words themselves are meaningless by themselves, but we imbue them with meaning because our society views the people behind these labels in negative ways. We do that to those words.

As someone writing in the disability advocacy space from the perspective of a parent, and as someone who is not disabled myself, I pay close attention to what disability activists are saying and how they want to be represented. I try to keep up, because getting the language right is the least I can do. Being told to change my vocabulary is not the equivalent of oppression. I am being asked to respect people’s choices and I put conscious effort into this. This doesn’t deserve applause or a medal, this is common human decency. I expect to be corrected when I get it wrong. I am not the expert, the self advocates are, and I welcome their advice.

I will be the first to admit, it does get confusing. There’s the people first language which wants the person to come before the diagnosis. In this case Eva, my daughter, was a person who had CHARGE Syndrome, she was not a CHARGEr, an affectionate term commonly used in CHARGE community circles. In this movement someone with Autism is not an Autistic person but a person with Autism. But that’s where the confusion starts, because in many Autistic groups, the reverse is true, they want to be called Autistic, they see people first language as inherently negative because it sees Autism as something negative. They are proud of their Autism, it makes them who they are and they wear that label with pride.

In those circumstances, as with gender identities and anything else in the world, we just need to ask. We need to eat some humble pie and understand that we do not understand what it is like to be Autistic, or to have CHARGE Syndrome or to have Down Syndrome, and we need to assume we don’t know what is best in terms of those labels. Ask, and be prepared to be schooled.

While I like to think I am woke, I know I am still waking up, because while I claim to always respect these labels and language boundaries, when I like a term or phrase, or I’m attached to it, I still bristle when I’m told it’s not ok anymore.

This happened very recently with World Down Syndrome Day. There’s a movement happening at the moment called #notspecialneeds. It’s centred around Down Syndrome Awareness Day and on first glance, I got defensive. I thought of Eva and how I had happily attached that language to her, she did have special needs, that’s not a bad thing in my mind. Special is not a bad word. She was special. I told myself it made no sense. Had special needs already worn out its welcome already?

I have grown quite fond of the label special needs, and saw it as a positive. My daughter, Eva, was special. There was no doubt about that. And she had extra needs, no one would argue that either.

Then I found out more about the #notspecialneeds, my defences dropped and it clicked. The video doing the rounds shows a number of adults with Down Syndrome who talk about what a “special” need might look like. They talk about how a genuine special need might involve having to eat dinosaur eggs for breakfast, or wear a full suit of armour, or needing to get massaged by a cat. The video concludes with the people telling the camera that their needs aren’t special, they are like anyone else, they want to have opportunities and community, the chance to work and be accepted.

They are telling us they don’t want to be called special needs, and we should listen, but it goes further than that. They are telling us that while their needs might be considered special to many who aren’t familiar with disability, they shouldn’t be, because any needs they have are in order for them to live inclusive and safe lives like their abled counterparts. The needs they have aren’t extraordinary or special, they are basic human needs, to live and work and be accepted. We see them as special because we have set up society so they don’t fit, so their needs feel so far above and beyond what you or I might need. So their needs feel special and exceptional and more than what is normal. But what if every person, abled or disabled, was given the supports they needed to be happy and healthy and succeed in whatever way success meant for them, those needs wouldn’t be special then, individual sure, tailored to each person definitely, but not special. What if we didn’t have to label someone as special needs, because their needs were seen as having the same value as anyone else’s, and therefore didn’t have to be parcelled out and labelled differently.

Unfortunately we don’t live in that world. And because of this, while we should always  respect and honour the terms and language a group wishes to be labeled as, we can’t get rid of the labels altogether. Not yet. We still need those labels. We still need that language, even though it divides us. We still need to have a term to classify those special needs under, because without the terms, the supports and the assistance and the funding disappears. Without the terms, the need disappears from people’s vision, and when we don’t see something, we can pretend it doesn’t exist. We have to be able to highlight this need for this particular and specific group, whatever name they get filed under, because otherwise they fall into the vat of mainstream, where everything is treated “equally” but “equity” is ignored, and people fail in this environment because they aren’t given the help they need to thrive.

We don’t live in a world where special needs or disability are always easy to live with. We live in a world where everything has to be fought for. We need to have that label, so that those fighting have an identity and a face to fight for and with. But if we have to have the label, and it’s going to be used to represent an entire group, the least we should be doing is using the terminology that group wants it to be. Updating your language is the absolute least we can do.


7 thoughts on “#Notspecialneeds

  1. Cat

    Thanks Tessa, I found that really interesting and helpful… ‘just ask’ is great … In so many situations when we’re not familiar with someone else’s customs/culture/disability which is different to our own.

  2. Bonnie Dewart

    Thoughtful post. I have to admit it gets confusing, the changes in language I mean. But understanding why is the key to paying attention and trying to get it right.

    1. Tessa Prebble Post author

      Definitely confusing. And I don’t think we should expect to always be on the forefront of what language is best, just willing to listen when we are informed otherwise.

  3. Jodie

    In our family we love that Not Special Needs video. It has the kids hooting every time. When I first saw it I was taken aback because special needs is THE phrase which says a lot but is not really negative, and then I thought ‘yeah, that’s so true.’ I think the most important thing is to use language that is acceptable to those it pertains to, as the young people in the video point out. For myself, as the parent of a young child, I correct my other children to say “boy/girl with Down syndrome” as opposed to “Down syndrome boy/girl”. I say that Michael HAS Down Syndrome and that we wouldn’t call someone who has asthma, “Asthma girl”. We’d say “there was a girl at netball with or who has asthma.” It is something that can affect a person’s capabilities at times or their behaviour, but they aren’t IT. Similarly they don’t suffer from it (that can make it a bigger deal than it is).
    I don’t like the term Downs child/baby, but I’m sure Michael has been described as such when others have spoken of him. If I hear it, I cringe but I don’t usually say anything (I’m too polite and I know people don’t mean anything bad by it).
    I agree with you that we sort of need to use the term “special needs”, label or description, in order to get the resources/funds we need. In much the same way as the Child Disability Allowance. I don’t see Michael as disabled but if that gets him the assistance he is entitled to…Aside from appeasing the bureaucracy and paperwork, it’s about seeing the person, not the difference.
    The joke in our family is that I have some special needs too – I NEED my rascal of a two and a half year old to start walking before my back gives out, and I NEED a full night’s sleep… 🙂

  4. Reader

    I am autistic and prefer that term, but not because I am proud to be autistic or because I don’t think it’s a disability (it is!), but because I find person first language somewhat patronizing, especially when it is used by people who are not disabled. You shouldn’t have to specify that a person with a disability is still a person. Or course we are people! So I always cringe inside a little when I hear people say he or she is a person with x, as if they need to be reminded that the person in question is indeed a person just because they have a disability. I hope that makes any sense. Of course the best thing to do is just to ask what a person likes to be called.

    1. Tessa Prebble Post author

      It absolutely makes sense! I can very much see why people prefer identity first language, and similarly I can see why people assume that people first is the way to go. Thanks for your input! I think you’re totally right that at the end of the day, just ask and use whatever the person prefers.

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