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Disability Community and Culture

This page offers different insights into the very diverse disability community: including how powerful (and complex!) language is when discussing disability and how our society has historically defined the disability community.

On this page

What’s the “Right” Thing to Say When Talking About Disability

We know words matter. They can convey respect and a desire to connect or dismiss someone’s perspective or humanity. We use our words to build each other up and tear each other down. So, it’s no surprise that there are a lot of people asking, “What’s the right thing to say?” when it comes to disability. If you’re a City staff or curious community member who wants to jump right to the City of Portland’s"Disability Language Guide for City of Portland Official Public Communications", you can find it here.

In this access tip, I will use both “person-first” and “identity first,” disability language (more on that below). While there are many ways of describing disability (including debate over the term “disability” itself), these are the two most common ways of identifying in the United States.

Whether “identity-first” or “person-first” is used varies greatly by geographical region, the (professional or community) group, disability-specific community, and of course, individual understandings and preferences. Both person-first and identity-first language have roots in disability-led movements. Many of the ideas and concepts shared in the rest of this tip come from the thinking and analysis of the Disability Justice & Disability Rights Movements. Like every sociopolitical movement, the language used and promoted reflects core movement beliefs and is meant to be part of catalyzing change in society

A quick Google search for “disability language guide,” turns up over 226,000,000 (yes, 226 MILLION) results, and even looking through the top five pages will show a range of perspectives on how we should talk about disability. Why the complexity? Well, people use language to convey different meanings. In this case, people with disabilities (or often friends, family, teachers, and government officials who work on disability issues) are using language that reflects what they think about their disability, disabled people, and disability issues. Language choices are often meant to affect others’ perspectives on disability too.

This is worth repeating: language reflects and affects what people think about disability.

What people think changes over time, and so language changes over time, too.  Language is a way people make and convey meaning, so it’s complex and dynamic. Exciting, huh?

Disability is not a Bad Thing

One common theme in disability language guides is to convey that disability is not the terrible, horrible, no-good, very bad thing that we’ve been taught that it is.  

Content warning: Ableist language below.

But for a very long time, much of the United States followed the Medical Model of Disability. This model says that disability is an individual medical condition and the best thing we can hope for is that people with disabilities are “fixed” or cured. This mindset lent itself to language that described disability as an individual medical “problem.” Terms like, deformed, birth defect, idiot (once a medical diagnosis), and lunatic (another medical diagnosis) were commonplace. These became insults over time.

The “individual problem” language perpetuates negative views of disability. In this view, the highest possible good for someone with a disability is for a person to get rid of or try to “overcome” their disabilities (in other words, disabled people should try to be more like a nondisabled person). The idea of “overcoming,” disability often includes not asking for assistance or accommodation and trying to appear and act as though one didn’t have a disability. When this is impossible, disability is viewed as a tragedy. This view shows itself in dehumanizing language and language that describes a person in totality using only their medical diagnosis (e.g., he’s a schizophrenic, They're a diabetic).

Get to know me: I’m a Person, First

In the 1960s, people with intellectual disabilities pushed back against these harmful ideas and language with the People First Movement. This movement calls for people with disabilities to be described as “people first,” and emphasizes that disability is only one characteristic of a complex person.

Decades of work from People First activists led to the phrase people with disabilities becoming more common, including describing a specific individual as a person with [fill-in-the-blank disability]. This framework, and the language that goes with it, is widely adopted in education spaces, governments, and in parts of the United States.

Social Model: Identity-First

Also in the 1960 & 70s, lead and inspired by Civil Rights Movement activists, disability activists realized that many disability-related barriers could be eliminated by building structures and processes that include disabled people. They also realized that while some barriers were related to a persons’ specific body/mind, many common barriers existed for disabled people regardless of the disability they had. These efforts led to wide adoption of the Social Model of Disability in many disability activist communities. And language that recognized disability as being caused by systemic barriers in society. Activists began identifying politically as disabled people to recognize that they were disabled by societal ways of doing things.

People that use “disabled people” also perceive disability as a political and social identity. Identity-first activists state that the experience of being a disabled person is woven into every part of the way someone experiences the world. Identity-first activists say that disability is a social identity, like a person’s race, class, or (a) gender. Identity-first language is widely adopted in activist and justice-movement spaces, and some parts of the East and West coasts of the United States. It is also used in specific disability communities, like Deaf and Autistic communities, as both reclaimed language and a recognition of culture and community.

A quick closing note on “models” or ways of understanding disability:  There are more than two! No way of understanding disability erases another, and every model has faced criticism.

To recap: language can cast disability as a negative, individual tragedy, describe it as an individual characteristic, AND convey it as a lived experience that can bring pride, political identity, culture, and community.

But disability or disabled sounds negative!

Sometimes people challenge both identity-first and person-first language, asserting that the word sounds like a descriptor for something that “doesn’t work” or is nonfunctional. (“Like if a car or computer software is ‘disabled!’”)

Let’s talk a bit about where that discomfort comes from and who decides.

  • Who is uncomfortable? Is the discomfort coming from a well-meaning person without a disability or someone who will be described by it? That matters.
  • How connected are they to disability communities and culture? It matters if we’re asking a random person with a disability we know vs. looking to groups of people doing the work on community issues. People active in the Disability Justice & Disability Rights Movements have spent a lot of time considering how to identify themselves and  their communities.
  • Are we talking about a single individual? Does this person want us to include their disability in our conversation or article? How does this person want us to describe it? That is all that matters.  
  • Individuals, groups, communities, and movements get to choose how they describe themselves. Our personal preferences or feelings about which terms “sound better,” don’t really enter the equation.

A Note on Euphemisms

Euphemisms for disability, like special needs, people with different abilities, handicapable, etc. can be patronizing and insulting to people with disabilities. In the words of many disabled people, if there’s nothing wrong with having a disability, why would we use euphemisms for disability? This implies that disability is something negative.

And nondisabled people often use this language as code for “not like me/us” or “does something in a way I’m not used to.” If special really meant special (was a positive thing), wouldn’t everyone want to be described that way? And we all have different abilities, so taking the terms literally doesn’t offer much useful information. And there is now research showing that the use of euphemisms has a negative impact on how people perceive individuals.

If an individual has asked us to meet a need that they have, let’s go ahead and meet that need. If this individual has asked us to describe their needs in a specific way—let’s follow their lead. (And yes, they may prefer a euphemism—which is absolutely their right and should be respected.)

As a general practice, however, euphemisms are best avoided.

Reclaimed Language

Disabled people may choose to use words or phrases considered slurs to turn these harmful insults into something positive, community building, and empowering, often as an expression of pride. Reclaimed words could be words like: Crip, spaz, Crazy, Mad, sick, and gimp. Since these words are insults and slurs, using reclaimed language is usually a thoughtful choice by a group or individual who personally identifies with the specific term(s).

People without disabilities generally should not use reclaimed words unless they are referencing a specific group, effort, or movement that identifies using a reclaimed term. If you are describing an individual who uses a reclaimed term for themselves, it’s a good idea to ask how they would like you to describe them.

What We Didn't Learn Today

Our messy, beautiful journey into disability language is coming to a close for today. Let’s review how far we’ve come: We’ve explored the connections between language and Disability Justice & Rights Movements, medical and social models, identity-first and person-first language, euphemisms, and reclaimed language. Whew!

Sometimes, we can learn many wonderful things and still come away with some unanswered questions. This is okay! And in this case, intentional.

Let’s take a minute to acknowledge what we didn’t learn.

  1. How to avoid offending anyone ever.
  2. How to say the “right” thing every time.
  3. How to describe disability is one year or one decade.

People are complex. Language is complex.

Language is a habit, and habits take some time to change. It’s okay if we make a mistake AND it’s important to make the effort to understand and use the preferred and respectful language in different disability communities. Disability communities and disabled people are not a monolith. And we, disabled people or not, are learning and changing all the time. So are our cultures and communities. So how do you stay up-to-date, given this complexity and change? Instead of thinking of disability culture & language as something we can be trained on once and use forevermore, we can be taking steps to stay plugged in to disability communities. Attend events hosted by disability-led organizations, read articles and listen to podcasts by disabled people, stay updated and active on issues people with disabilities care about. Not sure where to start? Check out the links in this tip or past Access Tips.

When we connect ourselves and become part of the ongoing dialogues of disability history, culture, and community, the language will demystify itself.

Ways of Thinking About Disability

There are many ways of thinking about disability—where it comes from, who and what it impacts, and how we create disability justice in our communities.

Disability is a Social Construct

Like race, gender, sexual orientation, ethnicity, and other categories, disability is a social category, created by society.

But, wait? Isn’t a disability the same thing as a medical condition?

Well, that’s one way of thinking about it…

Medical/ Individual Model of Disability

People often think of doctors and other health professionals as the ultimate “decider” of disability. According to the Medical/ Individual Model of Disability, disability is a personal issue, and the best thing society can do to help folks with disabilities is to figure out ways to fix or cure a disability. This idea of disability has dominated our approach towards disability in the United States for a long time. Organizations sometimes create their own definitions of disability to decide who can access services. This definition varies widely at organizations and might be linked to individuals’ medical conditions, perceived ability to work, or how someone cares for themselves, among other things. This is another way the individual model of disability shows up.

What people don’t realize is that this is just one way of thinking about disability. There are more possibilities.

The Social Model: Disability is Caused by Barriers in Society

In the social model, disability is the experience of societal barriers and oppression based on the way people’s body/mind works. Society has defined a “normal” body/mind that caters to it in attitudes, rules, and ways of doing things, leaving disabled people out.The understanding that disability is a result of social and societal barriers  is referred to the Social Model of Disability.

People who subscribe to the Social Model of Disability believe that we must eliminate societal barriers for people with disabilities to truly have access and freedom in life. This idea spread through disability communities in the 70s and 80s and remains popular today. A couple of common misconceptions arise when folks learn about the social model, 1) any variation in ability is a disability; and 2) any experience of societal oppression is a disability. Neither of these are true.

We all have different abilities, talents, and skills. Disability in this context refers to a common experience of pervasive societal oppression based on how someone's mind/body works. And while many people, including people with disabilities, experience discrimination based on race, class, gender, sexual orientation, age, and so on, disability refers to oppression based on how someone’s body/mind functions.

Ableism is a distinct form of oppression based on (perceived or actual) mind/body ways of functioning, yet it can and has been used to uphold other forms of oppression. More on this soon.

Disability as a political and cultural identity

It is with the rise of the social model that individuals began to self-identify as disabled to claim their common experience of societal barriers. Disabled people also manifest their unique personal and societal experiences into expressions of disability culturethe creation of disability-centered art, beauty, politics, and new ways of thinking about the world.

Criticism of the Social Model

However, disability activists have been challenging and criticizing the social model for some time. People have recognized that the social model:

  • Does not acknowledge some people’s experience of limitations, even in the most accessible environment, or create space for individual or medical support of people with disabilities.
  • Does not recognize how disability intersects with other identities, like race, gender, class and more to create unique experiences of oppression and expressions of resilience.
  • Emphasizes removing barriers and changing attitudes about disability without calling for change in the underlying ways we relate as communities.

Disability Justice: Holistic, Intersectional, and Interdependent

Recognizing these gaps and the need for a more holistic framework, LGBTQ disabled people of color articulated the Principles of Disability Justice.

Intersectionality and interdependence are core to this way of understanding disability.

Intersectionality is not a new idea. It was pioneered by Kimberlé Williams Crenshaw, a leading scholar of Critical Race Theory and an attorney who has written extensively for decades on the intersections of oppression. She created the term intersectionality in her 1989 article on how Black women's experiences are erased in single-issue movements. She continues to speak about the urgency of recognizing intersectionality today. Her work on racism, sexism, and classism powerfully emphasizes centering the experiences of people experiencing multiple forms of oppression to move towards true justice.

Naming intersectionality in a disability context recognizes that ableism and other forms of oppression are interwoven. To eliminate disability-related oppression, we must follow the leadership and center the needs of people impacted by multiple forms of oppression.

Interdependence means that we all rely on each other to get our needs met and calls on us to recognize and honor this way of being. For instance, did you grow the food you are eating today? Or produce the electricity you’re using? Humans need each other to survive, the disability justice movement asks us to recognize this truth and celebrate our interdependence and unique intrinsic value as people in communities.

Why does it matter?

Today, we’ve explored three ways of understanding disability. They are certainly not the only ways out there. The way we think about disability is influenced by our experiences and cultures, our upbringing and our relationships.

Today, I leave you with questions to consider in the days and years to come:

  • Why does it matter how we think about disability?
  • How might it connect to the ways we understand ourselves?
  • How might it change the ways we create our communities?