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‘Special needs’ or basic human needs? On #NotSpecialNeeds and ableist language

Should we stop using the term ‘special needs’? Spinoff Parents columnist and advocate for children with disabilities Tessa Prebble looks at a new campaign to retire the phrase, launched to mark World Down Syndrome Day.

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 What once was a common term or phrase, is now outdated and offensive.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.

Tessa Prebble and her daughter Eva

I will be the first to admit it does get confusing. There’s the people-first language which sees 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 movement, my defenses 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.

Tessa Prebble is the writer/producer/creator behind The One in a Million Baby. Her podcast began in September 2015 and features interviews with different families living with special and medically fragile kids. It aims to tell the stories of those families so that those who are going through something similar can feel less alone, and those not in their shoes can learn about their lives. Follow the podcast through iTunes, Stitcher Radio or her blog. You can find Tessa on Facebook and Twitter.

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