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April 12, 2023
Writing Respectfully: Person-First and Identity-First Language
Shannon Wooldridge, Public Affairs Specialist, NIH Office of Communications and Public Liaison
When communicating about disabilities, diseases, and health conditions, it’s important to consider the unique needs and interests of the people experiencing them as part of daily life. More than 26% of adult Americans have disabilities, 45% of Americans have at least one chronic disease, and 22% of U.S. adults live with a mental illness. Despite anti-discrimination laws, people in all these groups experience inequities in employment, education, income, housing, and health care.
When we communicate with, for, and about people with disabilities, diseases, and health conditions, it’s important to learn the history of their experiences with social stigma and prejudice. One of the most effective ways of doing this is to listen to the self-advocacy groups in these communities; this will ensure that our language choices are respectful, inclusive, and supportive.
The first major self-advocacy disability rights movement, called People First, was formed in the United States in the 1970s. It gave people with disabilities spaces where they could speak for themselves, share ideas, and advocate for their rights. The People First movement focused on people’s individuality, personhood, and unique needs and experiences. A decade later, in the early 1980s, the national People with AIDS movement was founded. Its name was a response to phrases like “AIDS victims” and “AIDS patients.” Its declaration in the 1983 Denver Principles began the push for what we now call person-first language:
“We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term that implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”
Person-first language was written into law in the Americans with Disabilities Act (1990) and the Individuals with Disabilities Education Act (1997). In more recent years, there has been a push to use person-first language when writing about addiction and substance use disorders. According to Dr. Nora Volkow, Director of NIH’s National Institute on Drug Abuse, addressing stigma and writing about substance use disorders as treatable medical conditions is crucial for a public health response that ensures access to effective treatments. One example is calling addiction a brain disorder.
But language and societal values are always evolving. Person-first language is not a one-size-fits-all solution. Some within the disability community oppose person-first language. They believe that if language is needed to separate them from a trait of theirs, it suggests that the trait is negative. They may prefer to use identity-first language because they feel the trait is a core component of their identity.
Many people in the Deaf community, for example, have rejected person-first language. (Lowercase deaf is used to describe the audiological condition of not hearing; uppercase Deaf refers to the community.) The Deaf community in the U.S. shares a language—American Sign Language—and a culture. The most accepted terms are “deaf” and “hard of hearing.” “Hard of hearing” tends to refer to people with mild or moderate hearing loss, those who lost hearing later in life, or those who don’t otherwise identify with the Deaf community. But the distinctions and preferences are nuanced and personal. “Hearing-impaired” is viewed negatively. Since the Deaf and hard-of-hearing community is diverse, consider asking for a person’s preference when writing a story about one person. If writing generally, consider using what the community at large uses. Identity-first language options may include deaf people, deaf students, and/or the Deaf community.
Many people in the autism community also prefer identity-first language. They view autism as a central and important part of their identity and take pride in it. Some autistic people feel that identity-first language better reflects and respects neurodiversity. Some are firmly against person-first language. Others in the autism community, however, prefer person-first language—including many parents of children with autism.
Again, because of the diversity of perspectives, consider asking an individual’s preference when writing a story about one person. If writing generally, experts suggest defaulting to person-first language when writing about children and using a mix of person-first and identity-first language when writing about adults or autistic individuals generally. Examples of this mixed approach include President Biden’s Proclamation on World Autism Awareness Day 2022 and a recent blog post, Research Along the Autism Spectrum: Diverse Research to Meet Diverse Needs, from Dr. Joshua Gordon, Director of NIH’s National Institute of Mental Health.
The goal of person-first language—to avoid language that dehumanizes or stigmatizes people—is a worthy one. Person-first language is still best practice when writing about people who have defined diseases, such as “children with epilepsy” or “men with diabetes.” It is also best when writing about people with mental health disorders, such as “people with schizophrenia” or “women with bipolar disorder.” Communities that prefer identity-first language tend to be those centered on different ways of perceiving or interacting with the world. These communities have often developed a culture and sense of pride around their disability identity and don’t view it as an impairment.
Focus on what will create the most respect in your situation and with your audience. Here are some tips to consider:
- Be curious: Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why.
- Be creative: You don’t always need to use a single word or term. For example, you can switch back and forth between “people on the autism spectrum” and “autistic Americans.”
- Be respectful: Review your text for terms that may need extra care and consideration. Think about having the text reviewed by people from the community you’re trying to reach.
- Be flexible: Gauge the views of your audience and be open to adjusting terms as necessary.
- The NIH Style Guide
- Disability Language Style Guide
- Words Matter: Preferred Language for Talking About Addiction
- How Health Communicators and Journalists Can Help Replace Stigma with Science
- National Association of the Deaf – Community and Culture
- Autistic Self Advocacy Network