Tuesday, July 3, 2012

Should You Call Me Handicapped or Disabled? Let Me Be The Judge

I call myself “handicapped." Sometimes I say “disabled."
But that sounds more serious and permanent while, to me, “handicapped” sounds a little gentler.
It doesn’t change my situation.
I came out of my horrendous battle with cancer alive. But as a result of what I went through, I cannot walk or stand unassisted and must use a walker or mobility aid at all times. My balance is shot, my bladder is screwed up, my back hurts like hell if I sit or stand for long. I can barely feel my toes and have stumbled and taken serious falls three times in the past four years. I am virtually blind in one eye, so it crosses inward. I have lumps on my forehead where doctors cut into my brain. And I’ve got scary scars on my arms where the skin, weakened by steroids, was ripped off by bandages.
This is my harsh reality. So indulge me if I don’t use what I consider the harsher word -- “disabled” -- to describe myself.
It is not correct, journalistically. But then I’m not a reporter anymore, so I don’t have to adhere to style rules. I can just write what feels right, no matter if it is proper or politically correct. 
In some 30 years writing for newspapers and magazines, I had to abide by style guidelines. The Associated Press Stylebook was my bible, intended to create uniformity among newspapers and media throughout the country.
Should I use “gray” or  “grey?" Gray is the preferred spelling when you write for a newspaper. “Cactuses” or “cacti?" Believe it or not, it’s cactuses. 
That doesn’t mean everyone needs to speak or spell like that in the private lives. In my professional life, though, I had to conform.
One year ago, I began publishing my blog. I was finally able to sit long enough at the kitchen table to put down my thoughts. I called it “View From the Handicapped Space” because I believed I had a lot to share from my handicapped perspective.
But I learned that “handicapped” is not the preferred way to refer to people like me. When I bought a new AP Stylebook to help me with my writing, I found out I had already broken the rule about writing about people with disabilities.
Here’s what it says: “handicap It should be avoided in describing a disability.”
The National Center on Disability & Journalism, which is housed at Arizona State University in my former hometown, offers a style guide specifically to help writers compose stories about people with disabilities. I applaud the purpose but I don’t embrace some of the rules.
Here’s what the center says about the terms handicap and handicapped: “These words should be avoided in describing a person but are appropriate when citing laws, regulations, places or things, such as ‘handicapped parking’ ”.
And Ability Magazine also says writers shouldn’t use "handicapped” when referring to a person. 
“Handicap describes a barrier or problem created by society or the environment....For example 'The stairs leading to the stage were a handicap to him.’”
“Disabled or disability," the NCDJ says, refers to “functional limitations that affect one or more of the major life activities, including walking, lifting, learning, breathing, etc.”
I’ve got those. And I’ve encountered all sorts of stairs and steps that were a handicap to me. But I still prefer to be called handicapped. Disabled sounds so final. Handicapped has a hint of hope to it: maybe someday I won’t be so handicapped.
Perhaps it’s all in my chemo-brained mind, but that’s the way I see it.
I do alternate between “handicapped” and “disabled” in my blog posts just to vary the language. It’s not AP style, but it’s a basic rule of good writing. I also disagree with or have violated a few other guidelines suggested by The AP Stylebook, NCDJ and Ability Magazine.
They say it’s never OK to say someone is “confined to a wheelchair” or “wheelchair-bound.”
“It implies a judgment,” says the NCDJ. Instead, use “person who uses a wheelchair."
“Wheelchair-bound” suggests the opposite of what the chair does: “It enables a person to be mobile.”
Well pardon me, style-makers, but when I was in a wheelchair for months I definitely felt wheelchair-bound and confined. I had to propel myself around, learning quickly how worn your hands can become when you are pushing the wheel around. And how difficult it is to steer yourself up or down a slight incline.
When someone pushed me, he or she had to tilt me backward and forward to go up and over doorways and curbs and steps (which I HATED). To relieve myself when I was in bed, I had to call someone to lift me to a bedside commode and back to the bed. I used a sliding board to get in or out of the passenger seat of a car, a difficult task made nearly impossible if that car was a high profile vehicle.
To get into my wheelchair from my bed, I had to be lifted by someone or use my sliding board, a rectangular transfer aide. I missed my twin sons’ high school graduation because although I had a special pass from my rehabilitation center, I needed to be transported in a van that could carry a high-profile reclining wheelchair. Finding one that could pick me up at the hospital and drive me home turned out to be nearly impossible and prohibitively expensive.
If my expressions of what I went through puts a negative spin on wheelchairs, so be it. There was no source of freedom in mine for me.
I also feel similarly about the style suggestion that we should avoid saying someone was “stricken with”, “a victim of” or “suffers from." 
From the NCDJ: “These terms carry with it the assumption that a person with a disability is suffering or living a reduced quality of life. Not every person with a disability “suffers”, “is a victim” or is “stricken.”
Granted, not everyone is.

 But I sure was. I certainly suffered (as did my family and friends). I was absolutely a victim and I was not only stricken, I was broadsided, beaten down and paralyzed (for a while) by lymphoma. And while I am ever thankful that I came out of it OK, I definitely have a reduced quality of life.
If I ever write for publication again, I will adhere to the style guidelines. Those are the rules of the game. But for now, in my blog, I will tell the truth the way I see it, politically correct or not.