Penny’s story – why language matters


We’ve all heard the old adage ‘sticks and stones may break my bones but words will never hurt me’.


In the OI community we have had lots of experience of the breaking bones part but if you’ve also been the subject of taunts and bullying you’ll know that it’s not true that words don’t hurt.

Language and the choice of words can cause great distress as anyone with a disability who has been called a cripple, spaz, deformed and so on will know. The psychological after-effects caused can last much longer than a fracture takes to heal. Since I was a child in the 1980s society thankfully has made strides in its use of language. The Spastics Society changed its name to Scope in recognition of the word spastic being used as a term of abuse. People with Down’s Syndrome are no longer referred to by the demeaning and racist word Mongols. The term learning difficulties has replaced mentally handicapped and even loos for disabled people are called accessible toilets instead of disabled toilets.


Yet there’s still further to go


Words referring to disability may have changed but outmoded terms describing disabled people have lingered, skewing the impression people may have of their identity and quality of life.

Take these two sentences for example:

1. Penny has suffered from brittle bone disease from birth and is wheelchair bound.

2. Penny was born with OI and is a wheelchair user.

The first sentence makes me sound like an object of pity, giving the impression that I’m a Dickensian-type character riddled with a miserable disease and trapped in a wheelchair. Quite frankly it infers that I’m up the creek without a paddle.

The second conveys the same facts, that I have OI and am in a wheelchair, but in a much more neutral fashion, not making any assumptions about my life. I ‘have’ brittle bones rather than ‘suffer’ from it and I use a wheelchair, suggesting personal agency, rather than being tied to it.


Meaning of Words


But what if the meaning of a word changes depending on who is speaking it? Some people in the disability community have reclaimed offensive terminology as a badge of power, rebelling against ableist attitudes and stereotypes. Calling each other a crip, as long as they know others are happy with the term, is acceptable and shows group solidarity. They’re in on the meaning. A stranger on the street calling them a cripple, however, would still be offensive and aggressive.

Difficulties can arise when words that might be acceptable to one disabled person may not be to another. Take the word handicapped. I know an American author who is happy to refer to herself as handicapped yet the word makes me wince internally. In the US, she says, handicapped is an openly-used word that doesn’t necessarily come with the old-fashioned negative connotations as it does in the UK, but I wouldn’t have known that if I hadn’t asked her.


Ongoing debate


There there’s the ongoing debate about whether to refer to us as disabled people or people with a disability. Those who prefer the latter say it puts the person first before the disability whilst those who choose the former argue that they are proud of their disability identity and that, according to the social model of disability it’s not their condition that disables them but society itself.

Whilst language constantly evolves and changes in general usage it does so at an ice age pace in medical terminology. Abnormality, deformity, the rare disease burden and so on are frequently used terms medically whereas if a non-doctor called me abnormal and deformed with the burden of a rare disease I’d be very tempted to roll over their feet in my wheelchair.

Incidentally I always thought that calling brittle bones a disease was incorrect as OI is genetic and not ‘catching’ but when I asked my bone consultant she confirmed that OI is counted in medical terminology as a disease. To the ordinary person in the street, however, the word disease has a different meaning. Mention that I have one and they’ll be donning their mask, sanitising their hands and keeping two metres distance apart from me long after lockdown ends.

We also shouldn’t forget language that upsets people with non-visible disabilities. People with Type 1 OI may be told that they don’t look like there’s anything wrong with them and called a faker or a scrounger. Constantly having to deal with others putting into words their assumptions about what disability ‘looks’ like, and reasserting your medical diagnosis (when it’s no-one else’s business), can be very distressing indeed.


OI Community


In the OI community of course we know that there’s much more to being a person with brittle bones than pain, fractures and hospitals. We all lead our own lives to the best of our ability, just as those without a disability do. Which brings me back again to my earlier sentence – Penny has OI and is a wheelchair user.

Someone using language to describe me could focus on my medical history, the strong painkillers and other meds I need to take, how my mobility has declined and the chronic fatigue which leaves me with not many productive hours in the day. Or they could refer to me as a happily married woman with a loving family, friends, lots of hobbies and a successful career as a novelist. Both are descriptions are true but they sound like two different people. A fully-rounded representation of me in language is obviously somewhere in between.

To sum up, language gives the person speaking or writing it power that goes far further than a few spoken or written words. Which words or phrases to do with disability trouble you?

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