What’s in a name?

// 17 June 2014

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name tag.jpg

“So… what exactly do I call you?”

It’s a question that makes my heart sink every time some well-meaning soul asks it.

Like a lot of people, I don’t feel particularly comfortable being labelled. Once a label is stuck on you, separating it from your identity is like trying to scrape a price sticker from the bottom of a shoe – it takes ages and you can never seem to get rid of the damn thing entirely.

‘Feminist’ is one label I happen to like, partly because I chose to bear it. I’ll proudly describe myself as a feminist at parties and not care a bit if this means I have to spend the rest of the evening sitting on the stairs talking to the cat. But having to tell people ‘I’m disabled’ fills me with dread, because it’s not a label I decided on, nor is it one that makes me feel good about myself. And it comes with a set of stereotypes and misconceptions that even I can’t always get out of my head.

Some people hear the word ‘disability’ and think ‘burden’ or ‘completely incapable’. From the terrified look in their eyes a few seem to interpret it as, “Greetings! I’m a primordial swamp-monster who oozes noxious green stuff from her pores and if you say the wrong thing to me shadowy denizens of hell will grab you and make you go on a really boring diversity training course. Forever.” Once I’ve said the D-word out loud, it’s the only aspect of me they can perceive.

So how to phrase it, then? How to let someone know I need a bit of help without making the pair of us feel awkward? I can’t tell people what my exact condition is, not only because it’s none of their damn business, but because even doctors have to look it up on Wikipedia. ‘Blind’ is inaccurate, ‘partially sighted’ can be misleading and ‘visually impaired’ – the option I usually, begrudgingly go for – is just… clunky. Saying it out loud feels faintly ridiculous, like calling rain ‘precipitation’ or going into La Senza and asking where the brassieres are. It sounds like I’m parroting something I’ve been told to say.

Which, really, I am. I didn’t come up with it and it doesn’t suit the idea and image I hold of myself. Yet while I make it my business to avoid any other kind of label, I keep on using ‘visually impaired’ to describe myself, because, well, there never seemed to be much of a choice.

In her brilliant autobiography What The F*** Is Normal?!, comedian Francesca Martinez explains how she decided to stop telling people she has cerebral palsy – the term, she says, is “as attractive as an ingrowing toenail” – and simply say, “I’m wobbly” instead. It’s such a simple change to make, but before I picked up Martinez’s book I’d never considered how empowering an action it could be, or that maybe this was something I could do too.

Disabled people have labels slapped on us constantly, often from a very young age. There are the education-related labels like ‘special needs’, the labels given to many of us by the right-wing media – ‘scrounger’, ‘work-shy’ – and the crueller ones used as terms of abuse. Then of course there are the medical diagnoses; clinical, long-winded and often pretty gruesome-sounding too. They emphasise only what we can’t do, ignoring what we can. None of them are sufficient to define any one individual. None of them are words we chose to define ourselves.

(They’re never exactly sexy, either.)

We can try to alter how we are perceived – and the way we perceive ourselves – in all sorts of small, subtle ways. I can’t recall the moment I started thinking of myself as a woman instead of a girl, or the day I decided I was a feminist, but there must have been a turning point – a little light bulb moment – when I decided to take charge of that part of my identity. We do it all the time, adopting labels we feel help to define us, dropping those we don’t.

I can’t just suddenly deny I’m disabled because I don’t like the terminology, at least not unless I want to give up any support I might need. And I need to call this… eye-thingy of mine something, because simply saying ‘I can’t see very well’ prompts a host of people to offer me their reading glasses. But outside of a GP’s surgery or a census form, maybe I can take some measure of control over these labels too. Maybe I can just make one up that I can be proud of.

By heck it’s hard to think of something that works for uncooperative eyes though. ‘Wobbly’ is light-hearted, pleasant to say out loud and funny in the right way. ‘Squinty’? Not so much. I imagine it’ll take a good long time to find something that fits.

(Because I’ve already tried telling people the correct term for me is ‘Khaleesi’, and they’re having none of it.)

Image of a name tag that hasn’t been filled in, by Emily Rose, shared on Flickr under a Creative Commons license

Comments From You

The Goldfish // Posted 18 June 2014 at 3:11 am

My own policy on this is to accept the need to use different words in different contexts. After all, we name ourselves differently for different contexts; firstname, title plus surname, Twitter handle, various nick names etc.

With disability, I try to give people the precise information they need in the simplest terms and – if relevant – a request for whatever help I need. Sometimes this means nothing at all, other times it is “I am a wheelchair-user.” or “I need to sit down, may I borrow a chair?” or “My health makes me unreliable, so I might have to cancel.” or “I can’t meet you in person; would it be possible to do this on Skype?” and so forth.

I don’t know whether I’m lucky, scary or whether such directness is universally effective, but in my experience, if you talk about something as if it is very simple, they tend to treat it simply.

Diagnoses are useless, as you say, partly because they are so complicated (I wrote a lengthy treatise on why I don’t answer that question). Personally, I’m proud of my disabled identity in the same way that I’m a proud woman and a proud bisexual – not things I chose, but experiences I have and I feel solidarity with people who’ve experienced similar. But it’s a social and political label, so not especially informative.

Anyway, I am disabled, I have mobility and cognitive impairments, I am a wheelchair-user, I have a chronic illness, I have the Dreaded Lurgy, I am a duffer. However, none of these words are who I am – on that score, I think you should stand your ground with Khaseeli, or maybe Gemma, if you’re feeling generous.

Phoebe // Posted 11 July 2014 at 8:04 pm

Fab article! I think it can be a process becoming a proud disabled person, because society treats disability as “bad”. And the medical model, which is how we first approach our disability through the diagnoses process, is very focused on there being something “wrong” and looking for ways to be “fixed”. So I think its similar to the effect the media has on, for example, body image. You can say in your brain “disabled is because of the world” but it takes time to actually believe it. I first started having joint problems when I was 8, and it took me until I was 18 to actually say to people “I am disabled” proudly. But even now I struggle as a “Part-time wheelchair user”. One of my favourite things to do is to say my actual condition (ehlers-danlos syndrome) and then tell them to google it ;) People’s reactions are hilarious – I recommend trying it some time!

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