Deficit-Focused Language: Pathologization
In the past, language surrounding disability was most often used in dehumanizing and stigmatizing ways. Words like “disabled” “retarded” and “handicapped” were used to “other” or dehumanize people. Disability was seen as a negative trait and a person’s only defining feature. Over time, a paradigm shift has occurred, moving from deficit-focused language to person-first language, and more recently, identity-first language. Today, around 27% of adult Americans identify with at least one disability. Despite anti-discrimination laws, inequities persist in employment, education, income, housing, and healthcare for disabled folks. Recognizing the history of social stigma and prejudice that disabled individuals have faced is essential in shaping our language choices; not just to be respectful and inclusive, but proud and celebratory.
As we explore the history of self-advocacy movements and changing perspectives on disability, we can better understand the impact the way we talk about disability has on how disabled folks are seen in society.
The People First and Self-Advocacy Movements: Awareness
The People First movement, which originated in the United States in the 1970s, was one of the first times the disability community’s voice was heard. This movement facilitated sharing of ideas and advocacy for rights. Person-first language refers to phrasing that puts the person before the disability, (ie. “person with Autism” and “people with disabilities”). This language aims to indicate that disability is something that a person has, rather than a defining feature of their identity. It can be traced back to a statement by a self-advocate at a disability rights convention in 1974:
“I’m tired of being called retarded. We are people first.”
Person-first language was intended to emphasize the uniqueness of each person, their personhood, and their individual needs and experiences. Person-first language was adopted in legal contexts such as the Americans with Disabilities Act (1990) and the Individuals with Disabilities Education Act (1997). Person-first language became a prevailing approach, addressing disability as separate from a person’s overall identity.
Identity-First Language and the Neurodiversity Movement: Acceptance
While person-first language represents progress from deficit-focused language, it is not without fault. Many within the disability community prefer identity-first language, recognizing their disability as a core component of their identity. For instance, many Deaf individuals reject person-first language, using terms like “deaf” and “hard of hearing” to affirm their culture and community. Similarly, the Autistic community views autism as integral to a person’s identity. The Neurodiversity Movement teaches us that Autism (and disability in general) is a central, identity-defining feature that cannot be separated from an individual. The use of person-first language might perpetuate stigmatizing views, like the implication that “Autistic” or “Disabled” are bad words, or features someone would not like to be associated with. Under the identity-first framework, Autism is seen as an expression of neurological and cultural diversity, rather than pathology.
Identity-first language recognizes and affirms autism as an integral part of a person’s identity. It acknowledges that being autistic shapes an individual’s experiences, perspectives, and interactions with the world. By using identity-first language, we validate and respect the lived experience of autistics. Choosing to continue to use person-first language can inadvertently perpetuate stigma and continue to pathologize autism as a problem that autistics are tasked with overcoming. It implies that autism is a separate and negative condition that someone “has” or is burdened with. This can contribute to a deficit-based view of autism and reinforce the idea that being autistic is inherently inferior or undesirable. Identity-first language challenges this notion by emphasizing that autism is an inherent, valuable, beautiful, and inseparable aspect of a person’s identity rather than affliction. By using identity-first language, we contribute to a cultural shift that celebrates neurodiversity and promotes the rights and well-being of autistic individuals.
Language and societal values continue to evolve, and there is no one-size-fits-all solution. To ensure we are using language about disability responsibly and respectfully, it is essential to be curious, creative, and flexible. Being respectful involves developing our understanding of the ways that disabled folks are stigmatized in society and reviewing and revising our text to avoid terms and phrasing that may perpetuate stigmatization. Additionally, being open to adjusting language based on audience feedback demonstrates a willingness to adapt and create an environment that moves past awareness and acceptance toward uplifting and celebrating neurodiversity and the disabled community. Respect for the preferences and voices of the disabled and autistic communities is crucial in creating an inclusive and empowering environment.
Centers for Disease Control and Prevention. (2023, May 15). Disability impacts all of us infographic. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html#:~:text=Up%20to%201%20in%204,have%20some%20type%20of%20disability.
History of people first. People First of West Virginia. (n.d.). https://peoplefirstwv.org/old-front/history-of-people-first/
Identity-first language. Autistic Self Advocacy Network. (n.d.). https://autisticadvocacy.org/about-asan/identity-first-language/
U.S. Department of Health and Human Services. (2023, April 19). Writing respectfully: Person-first and identity-first language. National Institutes of Health. https://www.nih.gov/about-nih/what-we-do/science-health-public-trust/perspectives/writing-respectfully-person-first-identity-first-language#:~:text=Identity%2Dfirst%20language%20options%20may,and%20take%20pride%20in%20it.
Vivanti, G. (2019). Ask the editor: What is the most appropriate way to talk about individuals with a diagnosis of autism? Journal of Autism and Developmental Disorders, 50(2), 691–693. https://doi.org/10.1007/s10803-019-04280-x