Writing: Polly Burnay
Illustration: Polly Burnay
CW: This article contains discussion of ableism.
Two sisters – Polly, 21, and Hattie, 16 – have a chat about the problematic discourse surrounding disability.
Remind me, Hats. Why’re we having this chat again?
Um, because a few months ago we started having a conversation about ‘Normal’ and what it means to me, and you. And so, I think it’s just important to share our views on the subject and on disability in general.
The word ‘disabled’ is obviously a factual word because you’re NOT-able to do things. Why do you think it’s important that we talk about the word ‘normal’ rather than ‘disability’?
Because it really irritates me...in conversations. I have an issue with the word ‘disability’ too. But the thing is, the word ‘normal’ is so subjective, whereas with disability – you’re either disabled or you’re not. Say you’re getting 70% in a test and constantly keep getting it – that would be normal for me. So, you can have things that are ‘normal’ for you. When I’m at gatherings with Mum and Dad, people will say things like – ‘when was the first time you realised things weren’t normal with Hattie?’ – and to me, the opposite of normal is abnormal, so they’re just calling me abnormal. That just sounds a bit rude to me!
It’s funny because when we were younger, Mum never used to use the word ‘disability’ when she was talking about you. She would never say: ‘oh, she has some disabilities’. She would say: ‘she was born with some problems’. Do you think that’s even more of a problematic word? Or do you think it’s more sensitive than using the word abnormal?
...but I did have problems...I used ‘problems’ for a long time and I think that works because it’s like the word ‘complications’. I had some problems that we had to get over. She wasn’t saying I was a problem but that the things that I have were problems that got in the way of my life, which is true. That’s why I think the word ‘disability’ could be ‘less of’ an ability instead because the only thing I’m unable to do in life is ice skate– that’s hardly changed my life! I’m not really DIS-abled from anything but I am less able – whether that’s running in school (my legs or my back would start aching), or other things where I was LESS-abled ...but I’ve never been DIS-abled. I suppose in our day and age everyone gets offended by everything and I do think people reading this might think ‘actually, you’re just being a bit sensitive hun’...
It’s funny you say that. Iain Duncan Smith actually used the words “normal, non-disabled people” in a speech, and people were outraged. That’s people noticing there is something categorically wrong with the word ‘normal’ – I guess because it’s often suggestive of perfection. The word ‘normal’ only started being used colloquially in 1840. Until that word was used, the only thing people could compare themselves to was ideals – say, the body of a Greek sculpture – something that couldn’t be attained. Since ‘normal’ is now something we think we can achieve, I think the problem is that ‘normal’ is seen as synonymous with ‘healthy’. When really, what is normal to you is what matters.
It’s like the word perfect –
But the thing that is different is that with the word ‘normal’ (sorry to say this)... in medical terms, you aren’t normal.
Yeah – what I was about to say is that for ages I did have a problem with people saying to Mum: ‘what’s wrong with her?’. I had an issue with that, but then I realised that biologically, there was something wrong with me because my spine had an issue, and there still are issues, so fair enough! I just think there are other words that are less subjective and more universal, like the word ‘usual’.
Do you think that rather than using ‘normal’, we could even use ‘different’? ‘Different’ doesn’t really have positive or negative connotations...Like with the dude that wrote the dictionary – Samuel Johnson? Evidence suggests he had Tourette’s, but because no one knew about Tourette’s, no one saw him as at all strange; they just saw him as interesting and different. Nowadays we’d say ‘he’s got something wrong with him’.
I just think it’s our society trying to put people in boxes. It’s like – everyone who’s born without a disability is X and everyone born with one is ‘different’. It’s isolating. If someone introduced me and was like ‘Hattie’s a bit different because she was born with spina bifida’...well, Josh over there is different because he’s got glasses...so why does disability have to be the odd one out? Everyone’s different.
Do you reckon it’s because as humans we find it interesting that you as someone who looks ‘normal’, isn’t (medically)? Maybe the reason people want to find out about why you’re ‘different’ is because it’s difficult for them to understand how you look so ‘normal’? Maybe because Mum and Dad have treated you as ‘normal’ and because Louis and I see you as ‘normal’ (we haven’t seen you as anything else) – maybe because you identify as ‘usual’, that’s why you’re more sensitive to the word ‘normal’?
I just think that whether I was in a wheelchair and looked more disabled or looked less disabled I would still have the same point of view. Even though I look normal/usual/ whatever you want to call it, I still have the hospital appointments, the operations, the things associated with disability. I’m still living the life like that, so I’d still have the same mindset even if I did have a wheelchair. I just think the word ‘usual’ could be used instead. If you think about it, I’m not your ‘usual’ person because the amount of people that have spina bifida is much smaller than the amount of people that don’t. But that doesn’t mean I’m not normal.I just think the word’s outdated. Very outdated. And yes, people are getting more sensitive in this day and age, so why can’t we do something with that? Sometimes we can just change language – it’s not that hard. It’s like people going vegan...choosing not to eat meat or fish. I go about my life – I never use the word normal...
So how do you think we can stop people using it? The government website actually provides guidelines on how to write about disability. It has two columns: Avoid and Use. On one side, it said never to describe someone with a mental illness as being ‘insane, mental, mad’ and instead to use ‘person with a mental health condition’. And on the Avoid side it said never use ‘subnormal’, but it didn’t say anything about not using ‘abnormal.’ People see ‘abnormal’ as a scientifically correct word, and therefore acceptable, but ‘SUB-normal’ is more negative, more emotive.
If I was sitting in the doctors and they were looking at a scan, and they were like: ‘there’s some abnormalities here’ – then, I wouldn’t really flinch. It depends on the context because if you’re looking at a fully able-bodied person and then my body – there are some abnormal aspects. It’s so hard to explain. It’s when you’re describing a person that the word matters. If you think about it, an organ is an inanimate object – wait, no, it’s not. It’s living – it’s a functioning object but it’s inanimate in a way. If you’re describing that, I’m hardly going to get offended if you were describing my organ as abnormal...but if you were describing me as a person – knowing all my beliefs, morals – and then you call me abnormal – that just sounds rude to me.
Has anyone ever made you feel like you aren’t ‘normal’?
No. No one’s ever – you know what I find really interesting – I’ve grown up with my whole family saying ‘no one would ever know that you have a disability’ and that’s because all my scars and all my things are hidden. But as I’ve grown older I’ve noticed that my walk is slightly – I was about to use the word ‘different’ then! – my walk is not the usual walk. But no one’s ever brought it up and said ‘you walk a bit funny’.
I thought they had? –
No. There was one boy in like Year 9 that mimicked it and another boy told him to shut up.
Didn’t you tell him to piss off?
Probably...knowing my feisty self in Year 9...But I’ve never had someone blatantly say to me ‘you’re not normal’. There have been times where people we’ve met at social occasions have been like: ‘when did you realise she wasn’t normal?’ I remember hearing it growing up. That’s probably where the first mention of the word ‘normal’ came from...
Do you think that to make people more aware of the language around disabilities there needs to be a shift in how disabled people are represented? Like that ‘Superhumans’ advert for the Paralympics. Did you watch it?
They incorporated people with so many different disabilities.
Yeah – the Maltesers advert does that.
Adverts aren’t going to completely change the way people use language, but do you think there is anything in particular that can be done about the language used surrounding disabilities?
I do think those kinds of things help because ironically, by having the Maltesers ad showing a wide range of people, that will change how people use the word ‘normal’, because, seeing those people on TV, disability becomes normal to you. My favourite actors and all the Hollywood actors are all able-bodied people. Yes, there’s the odd few – like The Silent Witness. That’s the only program where I’ve seen someone with a disability.
Why is that ironic?
Because I’m using the word ‘normal.’ Like, it actually makes it more normal...
The other reason I don’t like the word ‘different’ is because growing up there was this program called Born to Be Different. The reason Mum showed it to me was a supportive thing, because someone on it had my disability. It followed the lives of 6 disabled children and every year they would show how they got on over the last year. One of the kids had spina bifida, and even though Mum wanted to show me it – I did watch it for a few years –and even though at first I was like ‘oh my god, I can relate’ I then realised the title. Ok, it did come out in 2000, so fair enough but ‘Born TO BE Different.’ As if, disabled people are born and their only judgement from other people is that they’re different.
Like the only way for them to be unique or stand out –
No as in, their aim in life –
Yeah – the thing that makes them them, is that they’re different?
Yeah, and it’s just so weird. The idea that disabled people are born to stand out. It’s like, no – we wanna blend in. We don’t wanna be disabled people.
I guess they’re trying to make you sound special, you know that idea of ‘oh... you’re special, you’re different’... it just sounds like you’re destined to be different.
Yeah, you’re destined to stand out from the crowd.
Podcasts which might be helpful: (https://www.bbc.co.uk/sounds/play/b04frbns)https://www.bbc.co.uk/sounds/play/b (https://www.bbc.co.uk/sounds/play/b04frbns)