Glossary of Terms
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. Below is a list of many words and phrases that we use at PHAME on a daily basis, along with definitions of what they mean. We hope these words and definitions can empower you to engage fully in conversations about disability.
Please note that we've developed these definitions through experience working with people with disabilities and through our own research into how other groups and organizations approach these terms. We have shared these definitions with multiple people with disabilities and have incorporated their feedback. 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 firstname.lastname@example.org.
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 ableism is diversity: both the respect for diversity and the pursuit of diversity.
Access is talked about a lot lately in regard to diversity, equity, and inclusion. Access refers to the ability to participate. If people with and without disabilities can "access" an event or opportunity, that means they are able 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 to people with intellectual disabilities.
Accessibility isn't just about people with disabilities getting into an event and participating once they've arrived—part of accessibility is making sure that people with disabilities are able to find out about events and opportunities before they occur.
Many people with disabilities require accommodations—modifications to the way things are routinely done—in order to gain access. See the section on accommodations for more information.
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 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.
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 they face.
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.
The Americans with Disabilities Act (ADA)
The Americans with Disabilities Act, also known as the ADA, was passed in 1990. The ADA 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.
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.
Definition to come.
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).
Intellectual and Developmental Disabilities
Intellectual and developmental disabilities (I/DD) are characterized by non-typical cognitive functioning. That means that people with intellectual and developmental disabilities have brains that are different from people without these kinds of disabilities. Their brains might be a little different, or a lot different, and those differences can present themselves in many different ways.
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. Instead, it is a difference in how the mind functions. Rather than being not able, people with intellectual and developmental disabilities are differently able.
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 who do not have disabilities” or "people without disabilities." We also think “mainstream” and “neuro-typical” are ok.
We never use words like “normal” or “able-bodied” because those words imply that there’s something wrong with people with disabilities.
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 important 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 wheel chair.
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.