Words and Language Matter, Part 2: How We Talk or Write about Disability
October 22, 2021 / Disability
by Diana Spore, PhD, MGS
In my blog last week, I wrote about how language matters when we talk about mental illness and those who have psychiatric diagnoses. This blog addresses appropriate or preferable language use when we refer to disability and to disabled people.
At the outset, I should note that I am identified as disabled by the Social Security Administration, and my limitations fit the definition for disability under the Americans with Disabilities Act (ADA) (1990, amended in 2008). My psychiatric label is “bipolar disorder.” Researching and writing this blog was like taking a journey within. I found a significant difference in the types of language that are promoted by different disability communities. Mental health advocates, activists and advocacy groups prefer person-first language, which acknowledges the person before their disability. But many other disability rights advocates, activists and advocacy groups see their disabilities as an intrinsic part of who they are and prefer identity-first language. These differences are explained in greater detail below. As someone who was trained to use person-first language, I found this journey to be eye-opening.
The Adult Advocacy Centers uses the Americans with Disabilities Act (ADA) definition of disability. Specifically, “disability” refers to a mental or physical impairment that markedly limits one or more major life activities, a record of such an impairment or being viewed as having this form of impairment. Major life activities include caring for yourself, concentrating, making decisions, retaining memories and walking. You only have to have one limitation to be defined as disabled.
Some Guidelines for Writing and Talking about Disability
When we refer to or portray disabled individuals, we should be respectful, preserve dignity and equality, be neutral in tone, be honest and objective, and offer a balanced perspective. Disabled individuals are more than just their disabilities and what they are unable to do. Their unique lives are comprised of multiple, complex identities, just like non-disabled people.
There are some general things to keep in mind when you’re referring to disabled people. However, it is important to keep in mind that these preferences can vary widely from person to person, so the best thing to do is ask someone directly what they prefer. If you can’t ask or are unsure, the following guidelines offer a reasonable starting point:
- Don’t refer to a disabled person as “suffering from,” “afflicted by” or “stricken by” their disability.
- Say ”hard of hearing” rather than “hearing impaired.”
- The preference of “deaf” or “Deaf” depends on whether a person identifies as part of the Deaf community, which has its own unique culture. Those who do will often capitalize “Deaf.” Those who don’t will usually stick to the lower-case “deaf.” Sometimes you may see “d/Deaf” as a way to be respectful of both groups.
- Use “disabled” rather than “handicapped.”
- Wheelchairs are a tool that provides independence and freedom to those who need them. Say “uses a wheelchair” rather than “wheelchair-bound.”
- Use “accessible parking” rather than “handicapped parking.”
- Say “learning disability” rather than “slow learner.”
- Use “developmental disability” or “intellectual disability” rather than “mentally defective” or “retarded,” which is a slur.
- Avoid cute euphemisms like “differently-abled,” “diverse-ability,” and “handicapable.”
- Use “non-disabled” for people who do not have disabilities rather than “normal,” “whole” or “able-bodied.”
People who prefer person-first language often wish the world to see them as a person before they see the disability. This can be particularly important to groups that face significant stigma, like people with mental health diagnoses. As examples, you would say “individual with a speech impairment,” “person with paraplegia,” “man with a learning disability,” “woman who uses a communication device” or “individual with a mental illness or a psychiatric diagnosis.”
People who prefer identity-first language often see their disability as an intrinsic part of who they are. The American Psychological Association (2015) notes that “Taking an identity-first approach promotes autonomy among and for people with disabilities. Indeed, adopting an identity-first approach instead of a person-first approach is a way to counter the criticism that the latter can occasionally imply that there is something inherently negative about disability. The add-on phrase ‘with a disability,’ for example, effectively dissociates the disability from the person. Disabled people who choose identify-first language claim and celebrate, rather than distance themselves, from their disabilities.”
Examples of identity-first language include ”disabled man,” “Little Person,” “Deaf woman,” “autistic child,” “blind person” and “dementia mentor/warrior.”
It is important to be aware of ableism in your thinking and your writing. This can be difficult because, like racism, sexism, colorism, ageism and any other -ism, it’s so deeply rooted in our society.
For context, The Urban Dictionary provides the following definition: “Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment or larger-scale oppression. It is oftentimes unintentional, and most people are completely unaware of the impact of their words or actions.”
Wikipedia defines ableism as “discrimination and social prejudice against people with disabilities and/or people who are perceived to be disabled. Ableism characterizes people who are defined by their disabilities as inferior to the non-disabled.” There are several different types of ableism, including physical, mental, medical, structural, cultural, internalized, hostile, and benevolent and ambivalent. The Wikipedia page also identifies strategies for preventing ableism, including promoting public awareness and providing examples.
Words and language matter. Use of negative, stigmatizing language about disability and disabled individuals can lead to discrimination, abuse, disenfranchisement and even hate crimes.
Disability is part of the human experience and may be viewed as central or intrinsic to who a person is. Disability is not merely a puzzle piece in a completed puzzle that represents a person. Rather, it may be viewed as a characteristic that touches all aspects of a person’s life (spiritual, mental, cognitive, emotional and physical).
What truly matters is how an individual wants people to refer to them, what makes him or her most comfortable and what captures his or her values, beliefs, rights and preferences. There is nothing wrong with asking someone about their preferences, and it is possible to do so tactfully and respectfully.
While the topics of ableism, disability pride, and identity-first language are more well-known in the disability community, we must do the work to educate the non-disabled about these issues.
Diana Spore is an advocate for individuals facing mental health challenges and those who are living with dementia, a writer/editor, and a mental health consumer in recovery. Spore received her Master’s degree in Gerontological Studies from Miami University (Ohio), and earned a PhD in Human Development and Family Studies, with a concentration in aging, from Penn State. She completed postdoctoral training at Brown University. Spore’s areas of expertise include mental health and aging, mental health recovery and trauma-informed care, medication optimization, long-term care, caregiving, and psychotropic drug use and inappropriate drug use among older adults. She is a former Board member of the Mental Health and Recovery Board of Ashland County (Ohio; MHRB). She was Editor-of-Chief of TAPESTRY OF OUR LIVES, an anthology of works created by individuals in recovery, a project that was done under the auspices of the MHRB. Spore served as Project Lead for a “Writing for Recovery” initiative, MHRB, and engaged in all aspects of the project, which has resulted in sustained spin-off efforts. Diana Spore has expertise in creative writing, writing for recovery, journaling for caregivers, legacy writing, and advocacy writing.