KosAbility is a community diary series posted at 5 PM ET every Sunday and 8PM ET on Wednesday. It's a gathering place for people living with disabilities, our families and friends, and interested others. Volunteer diarists offer specific knowledge and insight on a topic they know intimately. We invite you to comment on what you've read and/or ask general questions about disabilities, share your own knowledge, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Our diarist this week is homogenius.
Words. Labels. Identity. Assimilation. Self-Identity. Difference.
In any identifiable sub-group, these are complex issues that often provoke reactions, heated emotions, and intense opinions. For people living with disabilities or other life-altering conditions, it's often part of our deepest inner core. Some of us have known only "difference" for our entire lives--others change status from "temporarily abled" to living with disability.
So who are you? What do you call yourself? (We'll talk about this after the hop....)
Who am I? Who are you? Who are we?
I'm many things: I identify socially, professionally, and politically as a gay man. I'm middle-aged. I'm visibly overweight and technically obese. I'm a below-knee amputee. I have fairly significant ADD and Aspergers. I have lived with depression most of my life. I'm politically opinionated and vocal (I know--what a surprise!).
Having worked as a technical writer and editor, I have a lot of experience with words and what they represent (and how they represent...or conceal).
I am a person with multiple visible and hidden disabilities. I call myself disabled (without hesitation or reservation). But how I identify myself is my choice--your mileage may vary. You have as much right to describe yourself with your own words as I do.
As with any quantifiable "difference", living with disabilities involves a journey of self-discovery, acceptance, and empowerment. People who are not "disabled" within accepted definitions may think they're "normal"--but we all know they're just temporarily abled. And their status (and ours) depends on definition--where one sets the bar.
What constitutes "normal"?
I have a complex history of living with disability. I grew up with undiagnosed ADD and Aspergers. I was placed in gifted programs in school starting in the 5th grade, but constantly underperformed. I was always a fish out of water, socially, but never classified as "disabled". I believe I was clinically depressed by the time I was ten, but not treated until I was 25. My ADD wasn't diagnosed until I was 30. I didn't figure out my Aspergers until after I was 40. I lost my leg after 45.
When do you become "disabled"? If you need glasses? Hearing aids? A cane? A wheelchair? If you lose some permanent teeth? Your appendix? A finger? A leg? Your vision? When, exactly, are you no longer "normal"?
My point here is that, aside from the technical definition of "disabled" which Nurse Kelley covered so beautifully in the premiere of this series, what we call ourselves, how we think of ourselves is highly individual.
An example from my experience.
One of the issues we deal with among my fellow amputees is appearance. For some people with limb differences, appearing "normal" is extremely important--especially for new amputees and more often with women or kids. But some of us prefer to "let it all hang out". I've known amputees who didn't want to leave the house if their prosthesis was "in the shop". Some can't bear the thought of having their mechanical limb or bare stump exposed. Then there are others of us who don't care. I have never had a cosmetic covering on my fake leg--I'm sporting the hi-tech look of black carbon fiber and titanium. It's a highly individual choice. Likewise, vocabulary can vary. I have no problem with words like stump, amp, gimp, or pegleg. But some amputees are uncomfortable with them. It's very personal and it means different things to different people.
A rose by any other name.
Stuart Hughes is a radio producer for BBC International. In the opening days of the Iraq invasion in 2002 he stepped on a landmine in Northern Iraq. He had started a blog to keep his family and friends informed of his travels, and he kept it going while he went through the process of amputation and recovery. Like me, he lost his leg below the knee. Eventually he was fitted with a new leg, went back to work, got married and started a family, and became active in the campaign against landmines. But, as he wrote, he had a problem with the word "disabled".
I wrote Stuart and got on his case. I described the reality that we shared, in which we put on our legs every day and made occasional allowances to compensate with our altered forms. I likened our impaired abilities without our fake legs to "flopping around like a log-sided giraffe". He was kind enough to quote me on his blog and allowed that technically he might be disabled. But he didn't like to think so. Ironically, while I have no problem calling myself disabled or talking about life with one leg, it's still awkward for me to say out loud "I'm an amputee". In fact, I'm still self-conscious about saying the word "amputee" at all. Go figure!
Many people go beyond simply not liking words like "disability"--they venture forth into the land of euphemisms. "Disabled" becomes "physically chalenged", "handi-capable" or "differently abled". Sports for people with cognitive disabilities are called the "Special Olympics". By calling these euphemisms I'm not disagreeing or criticizing--I merely point out that they are kinder, gentler terms. Again, it's a matter of individual choice.
Then there are the uglier terms, like "cripple", "retard", "deaf and dumb" or "crazy". These have become rarer and less socially acceptable, but they still pop up. Of course, people who are change-resistant (mostly conservatives) will classify all of this as being "politically correct". In reality, language is a tool and usage does change over time.
To quote the CSI theme, "Who are you?"
Where do you fit on the ability spectrum and what do you call yourself?
NOTE: I'm sorry this didn't get to a third edit--my life has been topsy-turvy the past couple of days. One of our neighbors is moving out and gave us some beautiful furniture. So basically, on one day's notice we did about as much work as moving a whole apartment. I had to completely empty my bedroom to get the new furniture in. I feel like I'm sitting in a hotel room right now! I hope the diary came out OK, but I really had intended to edit some more.