1.1: The Language of Disability

Summary: The Language of Disability

• Language matters because it shapes our mental models
• The language of disability is evolving, context-dependent, and not absolute
• A good rule is to use the preferred language of individuals and communities, and ask when uncertain

How we talk about something shapes how we, and others, feel about it. Language creates narratives, or the stories we tell. It influences discourse, or the conversations we have. Language can be empowering or marginalizing. Cultures and communities often have their own words for things; indeed shared language is one of the characteristics that defines a community. The words a person uses can reveal their values and their world views.

Throughout this text, we will trouble at the language and definitions of disability, unpack disability narratives, and encounter a variety of ways that disability communities use language. The following definitions provide a starting place for this further exploration.

Starter Definitions

Disability – Very loosely, something that makes it harder for someone to do things than people who don’t have that same characteristic or circumstance. However, the definition of disability is very complicated and depends on which mental model a person is using to represent disability. Chapter 2 will unpack the definition and meaning of “disability” further and introduce multiple models of disability.

Ableism – Discrimination and prejudice against people with disabilities or people who are perceived as disabled. That is, treating someone differently on the basis of disability or perceived disability.

Structural / systemic / institutionalized ableism – Ableist narratives, practices, and world views that are so much a part of what people accept as normal that they typically go unnoticed or are presumed as facts of reality.

Referring to Disability: Choosing the “Right” Language

The language used to refer to disability and disabled people has changed significantly over time, and continues to evolve. Some terms may be more obviously offensive, such as the outdated euphemism of “differently abled,” or “the ‘R’ word” which people find so offensive the US government passed legislation to remove it from federal documents (Rosa’s Law). However, knowing how to respectfully refer to disability and disabled people after that quickly becomes context dependent and complex.

Person First vs. Identity First Language

“Person first” language is intended to literally “put the person first before the disability.” Examples of person first language are “person with a disability,” “woman with intellectual disability,” and “artist with cerebral palsy.” The movement toward person first language grew out of protest to the dehumanization of being treated like a health condition and not like a person.

“Identity first” is intended to treat disability as an identity. Examples of identity first language are “disabled person,” “Deaf woman,” “autistic artist.” The movement toward identity first language also grew out of protest to dehumanization; however, it uses a different mental model (see Chapter 2) that views disability as an important and integrated part of one’s identity.

While both person first and identity first language emerged as ways to refer to disability in a more humanizing and respectful way, they are grounded in very different views of disability. Person first language treats disability as a medical condition, and seeks to decouple the person from that condition—“I am seen as a person instead of a condition.” Especially for highly stigmatized medical conditions (e.g., person with HIV) this can be an important distinction.

Identity first language treats disability as just another aspect of a person’s identity such as gender, nation of origin, or religion. It seeks to integrate disability as one aspect of a whole person. Proponents of identity first language feel that disability should not be separated from the person, because, although it may be marginalized, it is not undesirable. In other words, it should not be stigmatized but instead celebrated.

Regional Differences

To further complicate the question of how to refer to disability, these are rationales are specific to disability in the United States. In other countries where disabled people have similarly fought for increased rights and respect, use of respectful language evolved in different ways. So what is respectful in one country or culture may be disrespectful in another.

Insider Language

Recall that shared language is a part of what makes community and culture. Disability communities also include insider language to refer to disability or to themselves. Some examples of insider language are “crip” (a reclaiming of the work “cripple” by the cross-disability community) and “autie” (a “nounification” of autistic used within the autistic community).

Some insider language may be acceptable for people outside the community to use, particularly when people with disabilities have explicitly used it to name to something outside of community spaces. For example, “crip lit” as a literary genre. However, insider language can often be disrespectful when used by people outside of the community

Characteristics that are recognized as central to a person’s identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about “male” and “female” people…not about “people with maleness” and “people with femaleness.” We describe people’s cultural and religious identifications in terms such as “Russian” or “Catholic,” not as “person with Russianity” or “person with Catholicism.” We describe important aspects of people’s social roles in terms such as “parent” or “worker,” not as “person with offspring” or “person who has a job.” We describe important aspects of people’s personalities in terms such as “generous” or “outgoing,” not person first language as “person with generosity” or “person with extroversion.” Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person t’hat I am would not exist. I am autistic because autism is an essential feature of me as a person.’

– Jim Sinclair, Why I dislike “Person First” language

So What Language Do I Use?

Some readers may come to this text having been taught that they must use person first language to be respectful. However, not only is there no hard rule, but many people find identity first language more respectful.

Some communities have strong opinions about which language to use. For example, the intellectual disability community generally prefers person first language, while the Autistic community generally prefers identify first language. Use the language the community prefers when speaking generally about the community or population, or when you have no other way to determine a preference. For example, if you’re talking about the population of people who have been diagnosed with an autism spectrum condition, use “autistic people” (identity first language) to reflect community preferences.

On an individual level, you can use a strategy called “person-centered language.” That means, literally, to center the person’s own preferences for how they would like to be called. In other words, ask them what terms they would like you to use. For example, “What language do you use to describe yourself? Would you like me to use that language too?”

This textbook defaults to community and individual preferences with respect to language where known, and otherwise uses both identity first and person first language interchangeably.

Try It Out: Unconscious Use of Language

Which “sounds right” to you?

• Deaf person or person with deafness
• Downs Syndrome person or person with Downs Syndrome
• Blind person or person with blindness

Did the answer surprise you?

---

These communities have worked hard to instill their language preferences into U.S. culture. Deaf communities and Blind communities have a cultural preference for identity first language so most people will feel like Deaf person and Blind person “sounds right,” whereas Down Syndrome communities have a cultural preference for person first language so most people will feel like “person with Downs Syndrome” “sounds right.” The point of this exercise is not to get the answer “right” but to show how when language preferences become part of a broader society, they can become unconscious. We use them without being aware of what we’ve done. Critical disability provides tools to increase our awareness of this kind of phenomen.

Further Reading on Language

• Emily Ladau on disability language https://www.thinkinclusive.us/post/why-person-first-language-doesnt-always-put-the-person-first
• Avoiding anti-ableist language in autism research (and elsewhere): https://www.liebertpub.com/doi/10.1089/aut.2020.0014
• Insider language: cripping – https://crippingthecon.com/more-on-what-cripping-means/