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What label would you choose?
I’m a middle-class citizen. I’m a husband and a father, a native of Phoenix and an avid bird watcher. Those are all labels that I apply to myself, different pieces in the broad patchwork of my life. But what happens when others apply labels? The tendency is to choose just one of the pieces and lay it over the entire patchwork of a person, until it becomes the sole feature that defines that person.
This happens often to people with developmental disabilities. Others seize upon the diagnosis — which is just one part of the person — and use it to define the whole. You hear this a lot when people speak of “the disabled.” An entire group of individuals with different diagnoses, different skills and different lives is quickly lumped into one tidy category.
Not only is this problematic from the standpoint that it strips the individuality from each person, but it also masks everything else in that person’s life. That the person has friends, a job, hobbies and a home. All because of a diagnosis that was made at birth or in the very early years of life. What if we did this with every diagnosis? No one would dream of referring to a person or group of people with cancer as “the cancerous,” because it would be incredibly insensitive. When reframed in that way, the idea takes on significance.
I shared some of my self-described labels earlier. I can’t imagine what I’d do if I had to choose just one of them to describe myself for the rest of my life. I’m not any one of those things, and I couldn’t disregard the other parts of my life to choose. It would be even worse to have someone else choose for me. Think about yourself and all the things that describe you. What label would you choose, if there could only be one? What would you least want others to use? And how would you feel if they did it anyway?
I was listening to All Things Considered a few years ago (NPR fan is another of my descriptors), and I caught a great piece about the effect of labels on people who have developmental disabilities. One of the experts on the program had interviewed people to find out how they preferred to have their disability labeled, and the interviewees didn’t respond positively to any of the ones that were being used. So he tried a more open-ended approach and asked what people would like to be called. They said, “I’d like to be called Shelly.” Or, “I’d like to be called Lance.” They simply wanted to be known by their names.
It’s true that we’ve progressed from pejorative terms like “the retarded,” but I believe residents of the North Puget Sound can move even further than “the disabled.” We can start by putting people first, in our minds and in our language. So instead of saying the disabled, we say people with disabilities. Instead of saying someone is Autistic, we say that person has Autism. So we make it clear that we see the person first, and their disability as one part of the whole.
I urge you to join me in re-thinking how we talk about people, particularly people with disabilities. Consider the negative connotation of the words our society uses, and send in your personal experiences and ideas to suggest new ones. It’s up to us to create a language that truly represents our desire to welcome people of all abilities.
Tom Everill is the President & CEO of Northwest Center and writes monthly columns for this publication. Contact him at firstname.lastname@example.org if there are topics related to people with disabilities that would interest you.