CHARLOTTE, NC, June 3, 2018 – Since I began writing this column about Living with ALS and its progression over a year ago, I have frequently used, or perhaps misused, the term “victim” to describe patients battling the disease. And really, living with ALS, I do think I am a victim of the disease. Though that does not make me victimized. Read on.
Recently, one of my former college roommates sent me an e-mail regarding the use of the word “victim.”
Since graduating from the University of North Carolina at Chapel Hill, my ex-roomie has become a successful attorney with considerable time working at the CDC as a significant part of his resume.
Are we victims of our disease?
He made the point that during the AIDS Wars of the 1980s whenever a government official, health officer or newscaster used the term “AIDS victims” it set off a firestorm of rage.
Angrily the response would always come back, “We are not victims! Look at me! We are people!”
Eventually, that politically correct term evolved, and stuck, by morphing into “people with AIDS” or “PWA.”
I have thought a great deal about the idea of identity as a human and victimization since receiving that e-mail.
Don’t call me that!
We live in a politically correct era where it seems, to me at least, that people have become overly sensitive about virtually everything to the extent that they have lost not only their sense of humor but their common sense as well.
Flight attendants can no longer be called “steward(ess).” A garbage man must be referred to as a “sanitation engineer.” The term “chairman” is incorrect if that person is a female. She must either be addressed as a “chairwoman” or a “chairperson.” No longer can we use the term “mankind” without criticism. The list is never-ending.
The genesis of the idea for PWA was apparently the conclusion that “Well, they deserved it” or “I’m glad I’m not an AIDS victim, ergo this messy conversation does not pertain to me.”
A distinction between PWAids and PWALS
I see the point and understand the reasoning, however, I do make a distinction between People With AIDS and those of us dealing with ALS.
According to “Merriam Webster” the term “victim” is defined as “one that is acted on and usually adversely affected by a force or agent.” That force or agent is further defined as being like cancer, or an automobile accident. Or even murder. Which is common usage – a murder victim.
There are also victims that are “one that is subjected to oppression, hardship, or mistreatment.” Or the victim of political attacks”
Using that definition as a reference point, would it be incorrect to call the people who died on 9/11 “victims”?
If someone is injured, crippled or dies as a result of a bombing such at the one in Boston during the marathon in 2013, is it fair to refer to them as “victims”?
Handicapped or Disabled? I really don’t care
People can no longer be “handicapped” because they are too busy being “disabled.” I am not quite sure what the distinction is, but for me, ALS itself is stealing my soul from me. Regardless of what it is called.
Does the fact that someone has been injured or harmed through no fault of their own mean that calling them a “victim” diminishes them as human beings?
Another attorney friend tells the story of walking into the office one day after he had just been hired. In a bright cheery voice he said to the all-female staff in the office “Good morning, girls.”
Though his words were not meant to be derogatory in any way, he was immediately chastised by some of his co-workers.
“You can’t call us girls,” they replied adamantly. “How would you like it if we said, “Oh the boys are out to lunch at the moment?”
To which my colleague responded “I never thought about it, but it wouldn’t upset me in the least.”
I am not ALS and it was not a choice – but am I a victim?
In fairness, my former roommate referred me to an article by the late Susan Sontag , Illness as a Metaphor, which changed his thought process about victimization forever after he read and considered it.
Personally, I have no problem being referred to as a victim because I am. ALS was not a lifestyle choice, it just happened. Those are the cards I was dealt and I seriously doubt that anyone thinks more or less of me as a result of my condition.
I feel that being stricken with ALS in no way makes me feel inadequate as a person. However, calling me a “victim” is not an insult by any stretch of the imagination. As my own condition progresses, I am considerably more aware of offending people when I am in a restaurant and begin to cough or struggle to get food to my mouth.
I constantly drop things because I have lost control of my arms even though my hands still function normally. I embarrass myself when I cannot hold on to a simple piece of paper or sign a credit card receipt.
It is those things that actually do make me feel “victimized” by the disease.
I may be living with ALS, but I am not victimized
However, I continue to research, write, travel and live a full life, with new challenges of course.
I do relate and understand how people may somehow feel they are becoming something to be pitied rather than accepted as a person. But that is how they feel, not how they should feel.
For me, however, when I tell someone I may just “drop by for a few minutes sometime,” they know I mean it….literally.
With that thought in mind, if ever you should write, I promise to “drop you a line” in return.
ALS victims unite!
Lead image by: to von Pete Johnson von Pexels - https://www.pexels.com/de/@petejohnsonphotography
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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