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People first vs identity first: a discussion about language and disability

Image: A local disability theatre group perform a play about the daily prejudices faced by people living with disability at the Wan Smolbag Theatre and Youth Centre, Port Vila, Vanuatu, February 2013, photographer Graham Crumb for DFAT

In Australia we are used to using ‘people first’ language (‘a person with autism’), to identify people with disabilities.  However, in other places, such as the UK, ‘identify first’ terminology (an ‘autistic person’) is preferred.  Both types of language have been suggested and are supported by communities within the disability sector and there are strong feelings about which is more appropriate and reflective of the views of people with direct experience of disability.

In the following piece journalist, university lecturer, PhD student and father of a son with cerebral palsy, Shawn Burns writes from an academic, professional and personal perspective. He outlines the philosophical basis for different choices about disability language, highlights some of the main voices in the current debate and provides a nuanced picture of the dynamic relationship between those who shape public discourse and those who are the subjects of this discourse.

Shawn Burns writes:

A call to put the word ‘disability’ “front and centre” has, unintentionally, fuelled debate about ‘people-first’ versus ‘identity-first’ language. The disability activist Lawrence Carter-Long recently unveiled ‘Disability. #SayTheWord’ with a Facebook post-come-campaign launch.

Carter-Long was writing in the wake of President Obama’s State of the Union address, where there was no reference to ‘disabled’. He challenged his Friends and Followers: “It’s 2016. “Disabled.” Go ahead. Say the word. It’s way past time to dump the silly euphemisms and not be shy about getting good and righteously pissed off about being omitted … Put disability front and center. Consciously. Intentionally. Often. “Disabled.” It’s okay. Simply #SayTheWord. Sing it. Own it. Please.”

It was a call to action. It was about, as Carter-Long wrote in a follow-up post: “The President shouldn’t be afraid to say ‘disabled’. Inclusion shouldn’t be an afterthought either. He and every other elected official should feel like we’re a constituency that they are going to have to reckon with. Businesses too. Schools as well. The movies we watch and the TV shows that are supposedly about “us” too.”

The initial post drew many supporters, but took an unexpected turn when some comments interpreted Carter-Long’s challenge as a question of ‘people-first’ versus ‘identity-first’ language.

Time to move on from ‘people-first’ language?

One reply stated: “I may be part of the minority, but I don’t want my son labeled as ‘disabled’ – he’s human, he’s male, he’s an adult, he’s unable to walk without assistance, he’s dealing with brain injuries, he’s funny, he’s loving, he’s compassionate – but he’s not ‘disabled’. He’s a person living with disabilities.”

Another wrote: I think I agree with (above). I am a complete, complex human. Part of that complexity, part of what makes me whole, is that I live with a disability. I prefer “person first.”

Carter-Long responded: “Language – along with understanding and evolution – marches on. What seemed progressive decades ago can be regressive now which is, I reckon, as it should be.”

Another wrote: “I will never understand the idea that being disabled is negative. I am autistic. I am disabled. This is my reality. To say that I need to call myself a person with a disability automatically puts the disability on a lower footing.”

The social model of disability

Advocates of ‘people-first’ and those in favour of ‘identity-first’ both claim foundation in the social model of disability. The social model, in short, says people with physical or developmental impairments are ‘disabled’ by a society that does not recognised them and what it takes for them to be included as productive, active and valued members of the community. The common stance unintentionally muddies the water for those tasked with fair and accurate representation of people and issues – like journalists.

As a journalism lecturer, I include lessons and discussions on the way disability is presented in news media. One of the discussions with my students is about the use of ‘people-first’ language. Developed in the early 1970s, it has a long history, and, essentially, it seeks to draw attention to the person ahead of the disability. It encourages a ‘see the person, not the disability’ approach.

The Australian approach

Governments across Australia and the globe, along with NGOs, have established media guidelines on disability, and the use of ‘people-first’ language is a staple instruction for many. Australia’s peak disability advocacy organisation is People With Disability Australia (PWDA). The PWDA web site includes a section on terminology, where it states preference for people-first language.

PWDA is far from alone in its use and encouragement of people-first language. Kathie Snow, for example writes: “People First Language puts the person before the disability, and describes what a person has, not who a person is. Are you myopic or do you wear glasses? Are you cancerous or do you have cancer? Is a person ‘handicapped/disabled’ or does she have a disability?”

The United Kingdom has long preferred the use of ‘disabled people’ over ‘people with disability’ and it has the media guidelines to match. Likewise, the Deaf and autistic communities have adopted identity-first language.

Opposition to people-first language

Autism Mythbuster’s Jim Sinclair wrote in 1999 about “Why I dislike people-first language”. He declared: “I am not a ‘person with autism’. I am an autistic person.”

Sinclair narrowed his opposition to people-first language to three points:

1) Saying ‘person with autism’ suggests that the autism can be separated from the person. It cannot.

2) Saying ‘person with autism’ suggests that even if autism is part of a person, it isn’t a very important part.

3) Saying ‘person with autism’ suggests that autism is something bad – so bad that it isn’t even consistent with being a person.”

Well-known disability and media academic Beth Haller recently drew attention to the perilous language path journalists need to negotiate when covering disability.

The need for variety and sensitivity

Haller pointed to the ongoing debate about people-first versus identity-first language and urged journalists to “carefully traverse a variety of disability terminology”, and concluded: “The one thing that both sides of the terminology discussion agree on is that language about disability is important, so journalists must clearly understand language preferences when reporting on disability issues.”

I don’t have a disability, but my son has cerebral palsy. I’m a PhD student, I write about the way disability is represented in Australian news media, including a recent article on disability representation in media coverage of the Americans With Disabilities Act and the National Disability Insurance Scheme.

Nothing about us without us

One of the first disability-focused books I read was James Charleton’s Nothing About Us Without Us!, published in 1998. Its message was to ensure decisions that affect a group must be reached by full and direct participation of members of that group. If follows, that journalists and journalism educators should ask ‘people with disability’ or ‘disabled people’ the language they believe best represents them. Positively, discussions with and formal feedback from my students has revealed they are willing participants in the discussion, and are proving to be proponents of change in workplaces in and outside journalism.

For Carter-Long’s part, ‘Disability. #SayTheWord’ goes beyond the people-first debate.

“Person first. Person last. Doesn’t much matter. What we’ve got to do is make sure the words ‘disabled’ and ‘disability’ – and the people they identify – are in the mix. Somewhere? Anywhere??? No. Every-freaking-where! Nothing without us. Period. You dig it?” he posted.

Related Posts

Comments 2

  1. Deaf people left this debate quite some time ago. There again, deafness has a complex relationship with disability, and the Deaf community defines itself mostly by its language, something no other disability group can do. Language trends come and go, and ultimately each person with a disability has to decide what best describes themselves. And that choice should be respected. On language, I once posted on deaf chat forums the suggestion that the Deaf community could reclaim the word “dumb”. The silence in response was, well, deafening.

  2. Bob Williams-Findlay says:

    There can be no agreed language when words mean different things to groups of people. I have a label because of brain damage at birth. That label is ‘cerebral palsy’ and through both medical and social construction it is used to describe my body and its impaired functions. The UK Disabled People’s Movement makes a clear distinction between an individual’s body and the societal responses to that body. We don’t focus on impairment because everyone views their own body as they please – so ‘people first or identity first’ has little purchase beyond specific groups.

    Our focus is on what disables us; it is the lost of bodily function of social restrictions caused by societal attitudes and practice? We believe the nature of British society disables us and therefore disability is an experience not a characteristic. As someone who has had the label CP for 65 years, I have no thoughts on it beyond its perceived impact; this is clearly a different set of relations in comparison with someone who sees themselves as an ‘autistic person’.

    My biggest concern with this debate is the dominance of characterising ‘individuals’ rather than addressing the oppressive social relations people like us are subjected to.

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Federal Budget 2021-22
Global health and climate change
2019-20 climate bushfire emergency
asylum seeker and refugee health
Climate emergency
disasters
Ebola
extreme weather events
flooding 2011
global health
NHS
NZ Election 2017
WHO
health
Health workers
Healthcare and health reform
abortion
adverse events
aged care
allied health care
Australian Medical Association
cancer
cardiovascular disease
child health
Choosing Wisely
chronic diseases
co-payments
Cochrane Collaboration
complementary medicines
conflicts of interest
death and dying
diabetes
digital technology
disabilities
e-health
emergency departments and care
Equally Well
euthanasia
evidence-based issues
general practice
genetics
health & medical marketing
health and medical education
health and medical research
Health Care Homes
health ethics
health financing and costs
health reform
health regulation
health workforce
HIV/AIDS
hospitals
HRT
infectious diseases
influenza
international medical graduates
journal articles
LGBTIQ
medical marijuana
Medicare Locals
men's health
mental health
MyHospitals website
National Commission of Audit 2014
National Health Performance Authority
naturopathy
NDIS
NHMRC
non communicable diseases
nurses and nursing
oral health
organ transplants
out of pocket costs
pain
palliative care
paramedics
pathology
Pharmaceutical Benefits Scheme
pharmaceutical industry
pharmacy
Pregnancy and childbirth
primary health care
Primary Health Networks
private health insurance
quality and safety of health care
rural and remote health
screening
sexual health
social media and healthcare
suicide
surgery
swine flu
telehealth
tests
TGA
trauma
women's health
youth health
Indigenous health
#CTG10
#NTRC
Acknowledgement
cultural safety
Indigenous education
Lowitja Institute
NT Intervention
social and emotional wellbeing
Uluru Statement
WA community closures
News about Croakey
PIJ Commissions 2021
Public health and population health
#PreventiveHealthStrategy
#UnmetNeedsinPublicHealth
air pollution
alcohol
consumer health matters
COVIDwrap
environmental health
Fetal Alcohol Spectrum Disorders (FASD)
food and nutrition
gambling
Government 2.0
gun control
health communications
health impact assessment
Health in All Policies
health inequalities
health literacy
human rights
illicit drugs
injuries
legal issues
marriage equality
Media Doctor Australia
media-related issues
nanny state
National Preventive Health Agency
obesity
occupational health
physical activity
plain packaging
prevention
public health
public interest journalism
road safety
sport
sugar tax
tobacco control
transport
vaccination
violence
Web 2.0
weight loss products
Royal Commission
Social determinants of health
discrimination
education
housing
justice
Justice Reinvestment
NBN
Newstart
poverty
racism
social policy
Summer reading 2020-2021
Tasmanian election 2021
Testing Croakey News category 1
The Croakey Archives
#cripcroakey
#HealthEquity16
#HealthMatters
#IHMayDay (all years)
#IHMayDay 2014
#IHMayDay15
#IHMayday16
#IHMayDay17
#IHMayDay18