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What's in a Name? A Lot

As a middle-aged woman, I have had my moments when I struggle with my identity. I am often referred to as “Pete’s or Dianna’s daughter” or “the Martin boys’ mom” or “the sister of any one of my siblings” or “Aunt Mimi.” But people don’t always see ME for ME; I’m usually associated with either the people in my life or the organizations I support. And, most of the time, I am fine with that. Because all of those labels are socially accepted – expected even.

List of adjectives used to describe me

But how would I feel about myself if the label people associated with me was less accepted? What if I was only known as a difficult, stubborn, selfish, picky nag? While any one of those adjectives may be accurately used to describe me at any given point, they do not singularly define who I am. By that same token, the labels we use to identify persons with disabilities do not singularly define all that they are.

In the world of special needs and disabilities, it can often be difficult to know which terminology to use when referring to different individuals. Many terms that were used as I was growing up are no longer satisfactory. The language used to describe people with intellectual and developmental disabilities has changed over the past 50 years, and will continue to evolve. Terms and language that are now considered disrespectful and offensive, were acceptable. Terms such as “retarded,” “handicapped,” “trainable,” “crippled” and “educable,” used well into the 1980’s, are no longer palatable.

Mark Twain once said, “The difference between the right word and the almost-right word is the difference between lightning and a lightning bug.” So, which words do we use when we discuss disabilities and the individuals with disabilities?

Today it is respectful to use person-first language, putting the person before the label, such as “person with a disability.” Susie Q isn’t “physically disabled Susie;” she is “Susie, who has a physical disability.” She is not defined by her disability; rather, it is one of many adjectives that may be used to describe her. She may also be kind, love horses, have a killer sense of humor and indulge in chocolate too much.

The following chart was published by National Youth Leadership Network (NYLN) and Kids as Self Advocates (KASA) in the article “Respectful Disability Language: Here’s What’s Up!” (2006) It summaraizes nicely the respectful way to refer to persons with disabilities.

A chart listing disabilities, their out-dated terms and their matching respectful language.

*The phrase now used in administrative rules and Department of Human Services (DHS) is “intellectual deficit” instead of "cognitive disability." This was officially adopted in order to remove the phrase “mental retardation.”

However, there are also individuals with disabilities who prefer to own their label, or in other words, take it back. These are individuals who have embraced their disability as an extension of their identity. For example, “Joe is an autistic person” versus “Joe has autism.” This is absolutely a personal preference determined by the individuals themselves. What is okay for some people is not okay for others.

Confused yet?

Here at Nishna, we often refer to the individuals we serve as “clients.” It’s easy; it’s respectful; it’s correct – technically. It’s also very clinical and doesn’t begin to scratch the surface of the personal relationship we build with them. On the funding side of things, Managed Care Organizations (MCOs) refer to them as “members.” Another common term in the industry is “consumers.” Again, correct, but impersonal. We pride ourselves on the connections we make with the individuals we serve. For many, we are like family. So, for the purposes of this blog and most other media you see from me, I will refer to our clients as “individuals with disabilities.”

Honestly, though, unless you are a care provider or an employer making accommodations, is there really a need to distinguish an individual’s diagnosis? We encourage people to “see the person, not the disability.” Very often, the first piece of information we have about a person is their name. We form judgments about people very rapidly. Those judgments accumulate, so the first piece of information is crucial, as it can set the stage for future interactions. If that first piece of information includes a disability, the built-in stereotypes will often follow. Labeling individuals often equates to categorizing (and limiting) their abilities. Do we want someone to limit us before they get to know us? Then why do we insist on doing that to others?

In other words, don’t judge a book by its cover. Be kind. Be respectful. If you don’t know what to say, just ask how a person likes to be described. Respect and consideration will go a long way to fostering a culture of inclusion.

Two men meeting. One says "My given name is Benjamin Buford Blue but people call me Bubba." The second one says "My name's Forrest Gump. People call me Forrest Gump."

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