Tessa and her daughter Eva at Wellington Hospital

Disability is not a dirty word: Moving away from ‘special needs’

When it comes to minority groups, getting the words right is important. Tessa Prebble explores the popular term ‘special needs’ when it comes to being a parent of a child with disabilities, and asks whether in using that term we are doing our children a disservice.

Disability is not a dirty word. So why do so many people shrink from it and jump through linguistic hoops just to avoid it?

It’s a word that represents a community and it is a word that has evolved and had reiterations according to what is culturally deemed okay. I won’t list all the alternatives through time. You know them as well as I do. They’re the words that should make you cringe if they’re said today. Some we deem unacceptable, while others get thrown around as if they hurt no one. In fact to point out they are hurtful can result in claims that you’re under a PC spell.

Words and language shift. While the rest of us may not have quite caught up, now, in 2018, “disability” is the terminology of choice for most disabled adults. If you listen to disability self advocates, and I encourage you to do so (see the list of advocates you can follow on Twitter at the end of this article), you’ll hear them saying loudly and clearly that this is an important part of their identity.

Disability. It’s a word used with pride. A word reclaimed, one that makes you part of an identity, a community. In itself it’s not a negative or a positive necessarily in terms of describing the person or experience, but something which combines with everything else to make you, you. It’s part of you and that part is important.

It’s also a word which tells us about its origins and causes. While its use can be seen as a reclaiming, the other part of it is acknowledging that it is us as a society that disable to begin with. As a population dominated by abled people, we have built a culture, society and infrastructure that is so inaccessible to some that it disables them.

We are the ones who don’t think to put in wheelchair ramps (at the most basic level). We are the ones who don’t think about subtitles for deaf people. We are the ones who cut funding for teacher aids who might help a child with disabilities stay in a classroom with their peers. We are the ones who sit willfully in disability seats on the bus and have few buses that can even carry people in wheelchairs. It’s us who cause the disability in our inability to make work, education, transport – life itself – equitable. We are to blame. Using the term disability acknowledges society’s place in that process.

If someone with a disability could move through the world equitably, disability might not be a relevant term anymore. Disability can be seen to refer to the ways that someone’s intellect, pain, neural divergence, illness, senses, energy and movement are unacceptable to society and in turn we actively and neglectfully exclude them from their normal rights and function among us.

Using the terminology of disability helps everyone to acknowledge these causes and assign appropriate blame. This is important and necessary. It may make us uncomfortable to be faced with the truth of what the word is telling us, but we’ve been making things pretty damn uncomfortable for people with disabilities, so perhaps it’s our turn to squirm a bit. By acknowledging society’s role in causing disability, we can start to see how we might increase equality.

Using the term disability tells us all that there is nothing wrong with the disabled person, it is a term and identifier which tells us instead that there is something wrong with the rest of us for not meeting everyone’s needs equitably. Using disability in this way allows us to see where the negative connotations should really be placed (hint, it’s us) and forces us to examine our culture and its effects.

Disability is also a word which gets straight to the point. Unlike some of the terms in recent years, it is not euphemistic, it’s black and white. In its straightforwardness, it says that there is nothing wrong with it or the person claiming it, and nothing to avoid. It’s not a word that needs accompaniment or dressing up. It’s fine, as it is.

For some, this lack of euphemism, this use of disabled as an identifier can be hard to understand and support. For many disability is not an identifier, but rather something someone is affected by, perhaps something someone suffers from. The person with the disability is not their disability, they are a person, with a disability.

The difference is subtle, but important. And it’s one of the big discussions happening within, and from outside, this community. It comes down to identity first language versus person first language. It’s not my place to say which is right, people first or identity first. The only group who can make these kinds of decisions are the people with disabilities themselves. If you’re in any doubt, just ask the person involved how they like to be referred to, how they identify, and when they tell you, listen.

What I want to address here is a specific language issue with one group in particular, parents to kids with disabilities – or, as many of them refer to themselves (and I did too), “special needs” parents. I’m talking to this group in particular, because I was one. I cannot speak for disability advocates, or make sweeping claims about people first versus identity first that will fit with everyone, but I can speak for parents in this position, and to them.

For many parents of children with all kinds of disabilities, from cerebral palsy to Down syndrome to autism, “special needs” is the phrasing we are given early on by doctors or counsellors. We cling to it and use it. It feels positive. It acknowledges difference, but it’s blurred around the edges. It seems to suit the little people in our lives who are different from their peers, but also so special. Because they are special, right? Special feels like the perfect word.

I know it did for me. My daughter was definitely special. She was deaf blind, with heart and brain abnormalities. She had low tone and feeding difficulties. She had CHARGE Syndrome, a very rare and complex chromosomal condition. The odds alone made her special. I liked the phrasing. It felt good to me. She was unique. Rare. One in a million. Special. She lit up the world. What isn’t special about that?

The author Tessa and her daughter Eva

After she died I started exploring the wider world of disability. I jumped on Twitter and followed a number of Actually Autistic adults and self advocates who held no punches in expressing their point of view. Sometimes reading them left me cringing. I felt uncomfortable with some of their views. Sometimes I reacted defensively. I shook my head and said ‘that’s just your perspective’. But always, I came away, thought about it, and came around to see  that maybe I had been wrong in my assumptions, and that their perspective was the one that mattered, not mine.

One area where I realised I was wrong was in my surety that “special needs” was right as my chosen terminology. I remember the first time I read that “special needs” was not a term the disability community liked. I felt myself bristle. But my daughter was special, I told myself. Her needs were particular and special. I thought the issue was with the words coming to having negative connotations. I thought to myself that every phrase we land on will come to have those same connotations, so why are we changing them? I assumed that the issue the disability community had with “special needs” was that it had come to feel like a negative thing because of the way society views disability overall. That the words had become loaded, weighed down with society’s negative associations, so we needed something new.  

But I had it wrong. It’s not about the connotations, it’s about acknowledging disability without trying to wrap it in cotton wool. It’s about avoiding euphemism, because to euphemise something is to admit the original phrase or word is bad. It’s something we need to wrap up with bows to be palatable. In reclaiming disability and owning it, the disability community is saying there is nothing wrong with them, there is something wrong with the world that disables them. There is no need to euphemise, no need to add bows. It is what it is. Wrapping the word up so it looks like something else denies the person involved, but it also denies the causes, it gives us a free pass.  

Now that my daughter is gone, I acknowledge it’s easy for me to be a social justice warrior about these kinds of issues. You could easily read this and say, well for you it’s hypothetical, you aren’t living the day to day. Maybe you might be thinking, you don’t get it, you can be preachy without having to prove anything in practise. And maybe you’re right. I’m not living the life of a “special needs” parent anymore, so I can be pious and righteous without facing the realities. I can idealise the life, my life, before my daughter died, and come down on whatever side suits me, because the consequences aren’t in my backyard, or in my home anymore.

There’s some truth to that. Eva’s death means that I can be holier than thou, and know full well that I while I can talk the talk, I won’t have to walk the walk anymore. I can look down on parents who rely on the euphemism, and claim that I know best and they are doing it wrong. But if you’ve read any of my writing, you’ll know I’ve never held myself up as the perfect example of anything relating to Eva. If anything I was the perfect example of an ableist. I’m not an example to be emulated. But I am an example of how someone can shift their perspective. And if I can do it, we all can.

Tessa and Eva at Wellington Children’s Hospital

Recently, a disability advocate I follow on Twitter gently reprimanded me for my use of the term “special needs” in a post right here on The Spinoff. I had used it just once in the article, but I had used it. When confronted, I got defensive and said it was still a widely used term in NZ and perhaps we were lagging behind other countries. I tried to contextualise it, to let myself off the hook. She kindly replied, encouraging me to use my voice to change that.

I realised she was right and I set myself some tasks. One was to write this article.

Another was to mention in various online “special needs” parenting groups that perhaps it was time we thought about changing the title to remove that terminology.

I picked a group. A big one. I wrote a post, trying to explain what I’m explaining here, that self advocates in the disability community are telling us they don’t like that term, and yet we are using it. How do we feel about that? Is that OK?

The responses I got were varied. Some parents, like me, thought we should be using whatever self-advocates were asking us to use. These parents saw that these advocates were the adults our children might grow up to be, they got to draw up the parameters.They got to make the rules.

Others could see that the change was necessary and important but were reluctant to use the term disability for themselves because they felt perhaps their child wasn’t disabled enough to qualify. They didn’t want to hijack an identifier they weren’t entitled to. I completely understand this fear. They didn’t want to appropriate this identity. It was new to them and they worried they would be insulting people with “real” disabilities. They didn’t want to overstep the mark.

The third group seemed to understand the need to change the name, but not the reasoning behind it. They tried to come up with alternatives, but every alternative side stepped disability for something less obvious and more euphemistic. “Differently abled” was a name that was tossed about. This group worried that using the name disabled or disability might exclude people or make the group hard to find for potential new parents. They worried that parents who really needs support might not ask to join the group because they might think they didn’t belong there. They assumed that these new parents wouldn’t identify with disability, either because they felt it didn’t fit them or because it had negative connotations. This group opted to keep “special needs” as it felt more inclusive and varied.

Which leads to the last, and the loudest, group. This group reacted strongly to my suggestion by saying, “I don’t think of my child as disabled”. They sometimes said there was nothing wrong with being disabled, but went on to say their child just wasn’t it. Others openly admitted they saw disabled and disability as being a negative and didn’t want it attached to their child. They saw the phrasing as limiting, while “special needs” was not. Some said they would let their child identify how they liked when they were older, but for now, they were sticking with “special needs”.

And there was the problem.

“Special needs” was acting as its euphemistic nature intended it to: to downplay, or placate or soothe these parents. It was providing a cushion for what they saw as the blow of disability. Somehow their child wasn’t disabled, but had “special needs”. That made them feel better. That helped them to accept it.

You might be thinking, well what’s wrong with making them feel better? What’s wrong is that they still considered disability to be a negative term.

As the parent to a disabled child, they still wanted to escape what they saw as a negative label. They couldn’t quite go the whole nine yards. They had internalised disability as a negative, while disability advocates are trying to flip this script and say, yes, we are disabled, and that’s okay – it’s society, not us, that needs to change.

These parents acknowledged the label of disability existed but they wouldn’t accept that their child was in that category. In doing so, they gave the negative connotations air to breath. They gave them life. They were, and I was too, part of the problem. Disabled was still a dirty word to them, one they wouldn’t attach to their own child.

One parent commented that sometimes we need euphemisms. I completely understand that.

When my daughter was diagnosed, the idea that a euphemism could have placated me was laughable. I was so far beyond being helped by semantics. I didn’t want to accept “special needs” or any other term. If you had suggested “differently abled” to me at the time I would have screamed. It didn’t make any difference to me, this wordplay. It didn’t help my daughter who couldn’t see or hear and might never walk or talk. It all seemed bad to me. If euphemisms pull you back from the precipice, I was already halfway down the cliff. No amount of careful synonym choice was going to convince me this was anything but tragic.

Once I accepted I had joined a club I never wanted to be in, I did warm to the term “special needs”, and it gave me a community, a group to belong to. That was helpful. It gave me hope, it gave me a future. It gave me a way to talk about myself and my daughter that felt comfortable. But it was also the only word that was suggested to me. It was the category I thought I now belonged to – disability as a term wasn’t even suggested.

I understand the need for euphemisms, not because they are necessary in and of themselves, but as a coping mechanism. I understand them because our society is so fucked up that a parent having a child with any disability needs a verbal tranquilliser in order to accept it. We shouldn’t need that kind of softening of the edges. The edges shouldn’t be seen as a bad thing. They are part of life, an important part. The problem is not the individual parents who cling to the term “special needs”, the problem is not the baby born with disabilities – the problem is a society which tells us having a baby like Eva is a bad thing, and backs it up by making it damn hard.

Tessa and her daughter Eva

There is a reason we have needed those euphemisms and continue to – it’s because the term disability is still considered a negative thing by most people. It’s because we as a society do so little to support people and families with disabilities, that how could it not be seen as a negative thing to have a child with extra needs?

We actively disable people through a lack of support. This leads to the experience of being disabled or having a child with disability to be seen as negative by society. This in turn leads to even less support because people with disabilities are hidden from view and aren’t valued in society. This in turn further disables people. On and on it goes.

From day one we make it harder for people with disabilities and for their parents. We make parents fight for equitable education for their children. We close down schools and remove funding so the choices for education are slim and many parents give up hope and leave their jobs to home school their kids. In some countries we elect presidents who think it’s okay to mock disabled people. This all leads to a society where in some countries the termination rate for Down syndrome is 100%. This isn’t about individual choice and it’s bigger than what term we choose to use when describing our children and their needs. It’s about how we, as a culture, create disability.

Because of the sheer scale of the issue, it’s easy to throw your hands up and say, well give me my euphemism if it’s not making any difference, but I’d argue that the change in our views, in the views of the people around us has to start somewhere. And while we, as the parents, shouldn’t be leading the charge, that role should always sit with the self advocates, we damn well should be listening to what they want and following close behind.

As parents, through our use of “special needs”, we are helping to sustain the view that disability is a bad thing. We buy into the idea, however subliminally, that disability is still a dirty word. We need to break that cycle.

That’s not just on parents. That’s on all of us.

But as parents to children with disabilities, disabled children, surely we can see that, yes our children are special, but they are also disabled, and that’s not about them, it’s about our world, our society. Giving disability another name, one that might feel easier to say, doesn’t help anyone – it just ignores the systemic issues that are causing the problem.

Tessa and Eva at Wellington Children’s Hospital

Disability is not bad. Disability is not good. As my incredible friend Heather Kirn Lanier recently said in her TED Talk on this very issue, disability is “just another expression of the human experience”. If we euphemise it, we deny it. We deny its importance, it’s existence and it’s origins. We deny it and we accept that it’s bad and that we’re okay with that.

We give these words power, whether negative or positive. And what disability advocates are saying to us is that we need to support the use of disability as their term of choice. If even parents of children with disabilities can’t face the term disabled, how is the world going to see our children? We have to be part of this revolution. We have to be part of the movement that not only acknowledges the positive in disability, but shines the light on what causes it.

I know it’s not easy. In those first few months you might just be trying to stay afloat. You might be by your child’s hospital bed for weeks or even years, and the battle over linguistics is far from your mind. That’s okay. Focus on what’s in front of you. Get through the storm. Be there for your family.

But when you get out the other side, when the waves settle and you get your bearings, when you’re home and the daily and weekly panics are subsiding, think about your child and who they are. Who they really are. Think about what limits them. It’s not them; they are whole. It’s the world around them.

Do you want to be on the side saying disability and the people with them are a part of life, not negative or positive, just people? Do you want to use terminology that acknowledges the causes of someone being disabled? Or do you want to be saying, “I don’t think of my child as disabled” and in doing so, forever telling your child, and others like them, that being disabled is somehow a bad thing.

I know which side I want to be on.

*

Here is a few of the disability advocates I follow. Check them out. 

Tessa Prebble is a columnist for The Spinoff Parents. She is also 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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