I am not a victim!

Zielinski, Karen

The words and images we use can shape the public image of people with disabilities.

IT WAS MONDAY MORNING and I had just opened the newspaper and sat my coffee cup down. Suddenly, I noticed my name on the society page. (For some reason, it’s part of human nature that a person can misplace bills, tickets to cultural events, and even airline tickets, but they can always find their name if it’s in print somewhere!)

The good news was that the article covered The Dinner of Champions: Triumphs and Treasures to benefit the Northwestern Ohio Chapter of the National Multiple Sclerosis Society. The event honored a local philanthropist with MS who was a community activist in matters of disability rights.

The bad news about the article was that the local radio disc jockey who was emcee of the event, the cocktail piano entertainment and person who opened the evening with a reflective prayer following the September 11 tragedy in America, and the honoree activist of the evening were all referred to as “MS victims.” My blood pressure went up at least 10 points.

Using the term “victim” is not politically correct (PC). Why is that important? It’s because language creates a reality for the public. When we have to say, “My Dad has cancer” or “I had a heart attack,” we cement the reality of our health status. Sometimes we don’t want to say the words, because deep down we realize that when we say them, we acknowledge reality.

Dangerous Labels

Words have a lot of power. More than 100 national disability organizations-including the AIDS Action Council, Washington, D.C., the National Easter Seal Society, Chicago, and the World Institute on Disability, Berkeley, Calif-have gotten together to offer guidelines that explain preferred terminology and suggest ways to describe people with disabilities. They recommend that when we talk about persons with disabilities, we focus on a person’s abilities rather than on what he or she can’t do.

That means avoiding words and phrases like crippled with, suffers from, victim of, deformed, retarded, and infirmed, which sensationalize disabilities. Such labels are never acceptable under any circumstances. Sometimes I think, “Oh brother, another special interest group wants their message heard.” Being PC is a pain sometimes-should we call disabled parking places “handicapable-only– differently-empowered-but-certainly-can-doable-people parking spots?”

People Matter

We should use objective terms such as a “person who has multiple sclerosis” or a “man who has polio.” When we say, “John uses a wheelchair and braces” or “John walks with crutches,” instead of “John is confined to a wheelchair” or “John is wheelchair-bound,” we focus on abilities, not limitations. The portrayal of a person with a disability must be positive and accurate. Please don’t limit me because I have MS. When words define me as a victim, they create a reality of dependence for those of us with disabilities. Somehow, that might transfer over into what society feels a person can do in the workforce or socially. Media can play a positive or negative part in the general public’s view of individuals with disabilities.

The Research and Training Center on Independent Living, a research advocacy group from the University of Kansas, says, “Words are important because they can shape the public image of people with disabilities.” The words and images we use can create a straightforward, positive view of people with disabilities or an insensitive view that reinforces common myths and discrimination. It’s important to remember that we’re talking about people first. It’s people that matter, not their disabilities.

Several years ago, I attended a workshop in Buffalo, N.Y. One of the speakers I wanted to hear was the poetry editor of a popular magazine. I sat front and center in the lecture room. She entered and I was surprised-she was using crutches and walked with a pronounced limp. When we spoke later, she told me that she’d had polio.

Over the years, I’ve reflected a lot on my reaction to meeting this woman. Why was I surprised? Did I think that a person with a disability couldn’t write and edit poetry? There was nothing wrong with her mind. My mind, however, needed a major attitude adjustment, especially considering that I’m a person with a disability.

Last week, I wore the wrong color shoes with my brown skirt. Some people teased me about being a person who is clothing– challenged. I don’t care if they tease me about that, but please, remember that I’m a person with MS. I’m not afflicted with or crippled with, but simply a person with a chronic disease. Plain and simple.

Karen J. Zielinski is a Roman Catholic nun and head of the Communications Office for the Sisters of St. Francis of Sylvania, Ohio, and is a freelance writer. This is her 26th year of living with MS.

Copyright Springhouse Corporation Jan 2002

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