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Health: Some people are 'disabled'. Others 'live with' or 'have a disability'. Here's the difference between identity-first and person-first language

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Darren Cunningham and Tricia Malowney prefer using different language and terminology when it comes to their disabilities. (ABC News: Patrick Stone) © Provided by ABC Health Darren Cunningham and Tricia Malowney prefer using different language and terminology when it comes to their disabilities. (ABC News: Patrick Stone)

Darren Cunningham was born with osteogenesis imperfecta, a genetic condition also known as brittle bone disease.

The 51-year-old is a wheelchair user and estimates he has had somewhere between 80 to 100 bone fractures over the course of his life.

While some people may describe him as "living with disability", that's not how he sees himself. He identifies as a "disabled person".

The difference may sound subtle, but for Mr Cunningham and many others in the disability community, it's an important distinction.

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"It's a way of making a statement about the fact that society in many ways is not accessible for me and the people like me — there are a lot of barriers around employment, housing and social opportunities," Mr Cunningham said.

"So when I identify proudly as a 'disabled person', I'm making a statement that until things improve and become more welcoming, I'm disabled."

For Tricia Malowney, it's different. She prefers to be known as a woman that "has a disability".

The 68-year-old has post-polio syndrome following a polio diagnosis in 1954 and she uses a caliper and crutches to aid her mobility.

Ms Malowney has spent decades as a disability advocate and received a Medal of the Order of Australia in 2018 for her work.

"The reason I don't use 'disabled woman' is because I'm not broken, I'm actually quite powerful," she said.

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"It's also because … when I was young, the term 'disabled woman' was a slur.

"Because of my age … the term 'disabled' to me means switched off, almost like a lack of power, and I'm certainly not lacking in power."

Identity-first language: 'disabled person'

The way Mr Cunningham identifies as a "disabled person", rather than someone who "lives with disability", is known as identity-first language.

Damian Mellifont, a research fellow at the University of Sydney's Centre for Disability Research and Policy, said many people who chose identity-first language saw their disability as a central part of who they were.

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These people don't see themselves as "living with disability" because it's not something they carry "with" them or can put down at the end of the day like a bag or suitcase.

"It's key to their identity and not something to be hidden or ashamed of," Dr Mellifont said.

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Mr Cunningham said some people in society were still hesitant to use the word "disabled" or "disability".

He said they were not dirty words, and phrases some people might substitute in such as "special needs" or "differently abled" made him feel "disconcerted".

Sydneysider Shamus Hart also prefers identity-first language and, as such, identifies as "autistic" rather than someone "that has autism".

"[Autism is] something that I cannot change about myself. It's the same way that I can't change the colour of my skin … it's basically wired into who I am," the 42-year-old said.

"If I say that I 'have' autism then that implies that it's pathologised, and for me that just doesn't really feel right to my identity."

Person-first language: 'person with/that has a disability'

Ms Malowney's preference to be known as a person "that has a disability" is known as person-first language.

This phrasing resists overemphasis on the disability and aims to offset the dehumanisation of the disability community.

"[Those who] prefer person-first language … don't want to be defined by their disability," Dr Mellifont said.

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"For these people, disability remains a part of who they are but it isn't everything.

"They choose language which emphasises they are more than their disabilities [and] highlight that they are people first."

Ms Malowney said she was proud of her disability.

"Disability impacts on my life, but it's something I'm actually quite proud of," she said.

"I'm happy to be who I am — and I think that sometimes gets forgotten in the mix."

Changing with the times

Person-first language has become common across wider society, but not necessarily within the disability community.

"Disabled", "disabled person", and other phrases previously used as slurs against the disability community are now being reclaimed by younger people, similar to how the LGBTQI+ community has taken back control of certain words.

"It's funny because we actually fought to stop being called 'disabled people' and now the tide has turned," Ms Malowney said of disability advocates from her generation.

"But now it's [the younger generation's] fight … so we pass it on to them, and language preferences may even come back around again."

Mr Cunningham said while he was a proud "disabled person" at the moment, that wasn't always his preferred terminology and it could change again in the years to come.

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"Even if I don't change, the discussion around how other people might change the way they talk about themselves will — and it will be great to be part of that," he said.

"Listening and learning are really important."

A mark of respect

The reasons people from the disability community use the language they do can come down to a range of factors.

Someone's preference can be affected by their relationship with their disability, the type of disability, when it was acquired and which country they live in.

Language around disability is constantly evolving, and the way people identify with it are diverse and individualised, Dr Mellifont said.

Some people often have a preference for certain terms, while others don't mind or use multiple.

According to a survey by US researchers of 519 people from 23 countries published this year, 49 per cent of respondents preferred identity-first language, 33 per cent favoured person-first language, and 18 per cent had no preference.

As such, there's no "right", one-size-fits-all terminology applicable to everyone.

So if you're unsure about a particular person's language preference, what do you do?

It's simple: Ask them.

"The bottom line is that there are many individuals who prefer person-first language, and many others who choose to use identity-first language — and this is fine," Dr Mellifont said.

"If someone freely chooses to use person-first language or identity-first language, that's their right to do so."

Mr Hart said using someone's preferred language was a mark of respect.

"I know quite a few people who say that they're 'autistic'. Others say 'with autism'," he said.

"I tend to respect that because every person on the spectrum is slightly different."

Mr Cunningham said it was important to respect people's language preferences — "even if you're not comfortable with what they choose".

"It's about giving them ownership for their own journey," he said.

"What we want is a space where people get to self-identify in their disability, sexual identity, gender, culture or whatever it may be."

The ABC is partnering with International Day of People with Disability to celebrate the contributions and achievements of the 4.4 million Australians with disability.

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