How We Talk About Disability
—and Why It Matters

At PHAME, we often hear that people feel unsure of how to talk about disability because they don’t know the correct language to use. We get it, and we want you to feel empowered to talk about disability.

Below is a list of many words and phrases that we use at PHAME on a daily basis (and one word we never say), along with our interpretation of what these words mean and how to use them. We hope these words and definitions give you the confidence to engage fully in conversations about disability.

Please note that we've developed these definitions through experience working with people with disabilities, conversations with people with disabilities, and our own research into how other groups and organizations approach these terms. The definitions are not extensive or absolute, but instead are a starting point for understanding the language related to disability.

Nevertheless, as an organization PHAME is still learning about these definitions and their application in the work we do everyday. If you'd like to share feedback about these definitions, please feel free to email us at info@phamepdx.org.

Ableism

Ableism is the systematic discrimination against people with disabilities. Everyone knows about racism and sexism, but ableism is the ism that doesn't get talked about as much, and it's just as important. Like racism and sexism, ableism is a system of attitudes, social expectations, and policies that oppress people for being different—in this case, for being disabled.

Ableist systems assume that everyone is nondisabled, and they create barriers to inclusion for people with disabilities. Examples include buildings without elevators, job postings with unnecessary mobility requirements, the social expectation of being quiet at a public performance, and many more.  The alternative to an ableist world is one that embraces and respects diversity on all fronts.

Accessibility

Accessibility refers to the ability to participate. While many people already think about accessibility in terms of mobility—i.e. wheelchair accessibility—it’s also important to think about whether an event or opportunity is accessible for people with other kinds of disabilities.

There are many things you can do to make sure an event or opportunity is accessible for people with disabilities. Here are some things to think about:

• Are the entrances, seating areas, and at least one restroom usable for people using wheelchairs (including larger power chairs)?

• Are you providing ASL interpretation, Braille and large-print programs/materials, and audio description?

• Is there a quiet area where people can take a break if they get over-stimulated, and is reentry allowed after they take the break?

• Do audience members/ guests feel welcome to make noise? (Some people with disabilities struggle to stay perfectly quiet)

• Has the order of events and duration of the event been clearly articulated? (Many people with I/DDs benefit from knowing what to expect)

• Are staff prepared to help guests with disabilities feel welcome?

• Does the website promoting the event/opportunity include clear information about the location, including parking and where to enter?

People with disabilities need different things, and while it’s important to think about what they might need, it’s equally important to invite feedback and communication. Provide contact information so they can ask questions about what to expect, and welcome them to let you know what they need to have a great experience.

Accommodations

An accommodation refers to a change or modification to a job, activity, or environment that enables someone with a disability to perform a similar task as someone without a disability. A common physical accommodation is the installation of a ramp: the ramp enables a person who uses a wheelchair to access the same space as someone who does not use a wheelchair. Accommodations are based on the needs of the individual. A person who experiences fatigue due to their disability might need a flexible work schedule, and a person who needs assistance with eating and bathing might need a personal support worker to assist them with those tasks.

People who experience disabilities encounter many environmental and social barriers in the world. For instance, for a person who uses a wheelchair, stairs are an environmental barrier. For a person who is unable to read, written text is a social barrier. The intention of accommodations is to assist people in getting past the barriers that prevent them from full participation.

The Americans with Disabilities Act (ADA) requires employers to provide reasonable accommodations to employees and job applicants. The United States Department of Labor has more information about these requirements on their website.

Adults

You might be wondering why this word is on this page. Well, a lot of people refer to people with disabilities as “kids” or use language that implies that they’re children, regardless of their age. This is just a gentle reminder that anyone 18 and up is an adult, regardless of disability.

The Americans with Disabilities Act (ADA)

The Americans with Disabilities Act of 1990, also known as the ADA, is a groundbreaking piece of legislation that prohibits discrimination based on disability. It requires employers to provide reasonable accommodations to employees with disabilities and includes accessibility requirements for public accommodations such as public transportation and buildings. Wikipedia has a comprehensive page dedicated to the ADA.

Dignity of Risk

This is one of our Core Values, and we think it’s pretty awesome. It means that people with disabilities have a right to take risks, fail, and learn from the experience. This is how growth happens, and to deny people with disabilities of this experience is to deny them a full life.

Empowerment

Empowerment is the state of having power and control over your own life. It's about playing an active role in making decisions related what you do, including where you live, what you do for work, who you spend your time with, and so much more. Everyone has the right to being empowered in their own lives, regardless of whether they have a disability.

Equity

“Equity” sounds similar to “equality,” but it’s more than everyone getting the same thing. Equity is about everyone getting what they need to survive and thrive based on their own personal situation. An equitable system levels the playing field so that people of different backgrounds, economic situations, genders or orientations—and people with and without disabilities—can all achieve their highest potential.

Inclusion

Inclusion is mentioned more and more lately in regard to diversity and equity. At PHAME, we use the word inclusion to refer to people with and without disabilities doing something together. This means that both people with and people without disabilities are represented in a group (the group being an audience, a group of performers, participants in a class, etc).

Inclusion is an important topic when talking about disability and the arts, because people with disabilities are often excluded. As we as a community seek to become more inclusive, it’s important to think about inclusion both in regard to the audience (the people who experience the art) and the artists (the people who make the art).

Inspiration

Inspiration is a word we avoid at PHAME. Too often, people with disabilities are used as tools for inspiring people who don’t have disabilities. Social media is full of examples of this: videos or posts that focus on the accomplishments of people with disabilities for the sake of making people without disabilities feel better about their lives. This is called “inspiration porn,” and it dehumanizes people with disabilities and defines them by their difference, rather than acknowledging it as one aspect of their full personhoods.

At PHAME, we don’t refer to our students as “inspiring” because the term comes with a lot of baggage. Our students are pursuing their own empowerment by learning new things and expanding their knowledge and skills. Rather than say it’s inspiring, we just say it’s pretty cool.

Intellectual & Developmental Disabilities

Intellectual and developmental disabilities (I/DDs) are characterized by non-typical cognitive functioning.

Unlike physical disabilities, intellectual and developmental disabilities are often invisible. Some examples of intellectual and developmental disabilities include down syndrome, autism, fragile X syndrome, and Williams syndrome.

Disabilities often have a corresponding medical diagnosis; however, an intellectual or developmental disability is not a disease or something needing to be fixed.

At PHAME, we refer to people with disabilities as just that: people with disabilities. This puts the emphasis on their personhood, not their disability. Some people with disabilities prefer to be called “disabled people,” and just as we would with anyone else, we’re happy to call them what they want to be called. And if you’re wondering about the term “special needs,” at PHAME we choose not to use it. Why? Because based on our research, people with disabilities don’t want to be called (or associated with the term) “special needs.” That’s reason enough for us.

People Without Disabilities

Many people are unsure how to refer to people without disabilities. At PHAME, we think the best practice is to simply say "people without disabilities." We also use the term “neuro-typical.”

We never use words like “normal” or “able-bodied” because those words reflect negatively on people with disabilities.

Person-First Language

Person-first language avoids defining people by their disabilities by focusing on the person before the disability. For example, person-first language would say “Anna is a woman with a disability.” This puts the emphasis on Anna being a person with many qualities, and one of them is the disability. The disability does not define her.

The opposite of person-first language is identity-first language. Identity-first language frontloads the disability: “Anna is a disabled woman.” This arrangement of words puts Anna's disability in front of any other qualities she might have. That might be ok with Anna (maybe she thinks of her disability as being her most identifying trait), but at PHAME we choose to use person-first language as a default. If someone lets us know that they'd prefer we use different language, we're happy to do so.

Person-first language is also important when describing people who use mobility devices such as wheelchairs. For example, instead of saying “Anna is wheelchair-bound,” we like to say “Anna uses a wheelchair.” That puts the emphasis on Anna, who does many things, one of which is use a wheelchair.

The R-Word

You probably don’t use this word. But if you do, today is a great day to say never again.

Self-Advocate

When talking about intellectual and developmental disabilities (I/DD), a self-advocate is someone who uses their expertise as someone with a disability to represent themselves or other people with disabilities. Self-advocates use their own experiences, knowledge, and skills to communicate to other individuals, organizations, and government agencies how best to support the needs and goals of people with I/DD.

A common phrase when talking about self-advocacy is "nothing about us without us." This means that there should always be someone with a disability (or many people with disabilities) represented when laws and policies related to disability are made. A self-advocate represents other people with disabilities and makes sure that their voices are represented in policies, laws, and other important decisions.

Want to share feedback about these definitions, or recommend a term to add to the glossary? Email us at info@phamepdx.org.