Spinal Cord Injury and Paralysis Community

I’m a voyeur. I like to watch people, I notice things, I’m curious about how people and stuff work. So when Facebook (FB) came around, oh I was “soooo” in heaven, cuz I could stalk around, without anyone knowing I was there, directing my focus here and there catching up with the latest “what I’ve done” photos, words of wisdom and interests of my FB “friends” all without detection. I’m a shadow floating about the scene barely leaving an occasional “like” or a random comment here and there feeding my need to know.

While on a recent silent FB tour I happened across this post in the news feed, “A person posted on one of my groups that they are offended when someone says their wheelchair bound, I said to her I hate all this political correctness BS, this is what is wrong in our country, we can't say anything without people being offended, and there more important things to worry about then this kind of stuff...What do you think of all this..?” People got all jacked up with 152 comments last I looked. Sounds like a hot topic to me.

I have strong feelings that the label “disabled” doesn’t reflect the truth about the 54 million people in “the club.” Just look at the word abilities meaning, something I can do and the adding of “dis” changes my “can do” to “can’t do” with a snap of my fingers. The word just doesn’t jive with the community that the word "Disabled'' labels. Words create images in our minds and I believe it’s time for a new word and new images to build new possibilities in our minds. Words can hurt and they can also heal.

While in Vancouver during the 2010 Winter Paralympic Games I was working as an athlete services coordinator for the US team and my friend Josh George was working a journalist for the US team. We had this on-going conversation about “that” word, Disability. We played with all kinds of words doing our best to create alternatives but nothing fit. It’s still an on-going work in progress with something evolving to represent "the club" with more clarity.

"The most powerful words you will ever hear is what you tell yourself" - Randy Snow. From the second trimester of our lives to six years of age we learn all we know from the people around us. All we see and hear mold us. If those people teach us we are not able then that is our internal dialogue from then on out until as adults we change it. Negative self-talk, created subconsciously, takes a huge toll on our psyche. This type of self-talk is reinforced by people allowed to speak to us with words that reflect "lack language," and our ability is diminished. It’s invisible, persistent and insidious.

Last January I took a position with the Open Doors Organization out of Chicago to educate Amtrak employees about disability awareness and how the ADA regulations interact with Amtrak regulations. Part of the program presents how to use appropriate language when interacting with a person with a disability. The idea and focus of this part of the program is what’s called

people-first language, the person first then the disability. Our classes were struggling with the concept as the English language doesn't support people first language as French and Spanish do. It was a stretch for these folks but it's a stretch we have to make for the rest of the world to get on board. That’s why I feel it’s time for new words.

New words are being created and used all the time. The Reeve Foundation is using people-first language with Quality of Life grant applications. Words are powerful and they define our world. With that in mind I have continued my quest for a new word for disability and I haven’t got one yet. But I do have a new word for the term able-bodied. I have not been fond of able-bodied or AB for quite some time. And now I’m unveiling this new word just for you. Dah-tah-dah…from here on out, AB’s will be pop-ups. It’s a new perspective; people that stand and move through the world are now pop-ups and that feels good to me.

In Joy, Blessings to All! Candace

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Copyright 2011 Candace Cable

JLo: Candace, I think this may be my favorite posting ever of yours. So many people can learn from this. I even thought at first that your post is great for children growing up, make them understand young so they are not tainted and influenced by what words mean.

Of course, it is great for adults, too, because boy oh boy are we some harsh people. I'm curious on your new word for ya know that word... disabled. PLEASE keep us posted if you think of anything unique. I myself will now put some good thought into this too.

One thing that has been really engrained in my brain since working at CDRF is that the paralysis community is not defined by their disability.. really this is true for the disability community as a whole. I often now find myself explaining this to potential interns every semester when I first meet them saying, "You might have brown hair but you are not defined by your brown hair. You're not brown-haired. You are a twenty-something-year-old living with brown hair." Maybe that's a silly example but I've learned so much how the importance of the words 'LIVING WITH' really impact how we describe someone.

Again, wonderful post, very enlightening, my hope is more people have a chance to read it and understand the message of it.
Joe: Labels and words can hurt people in so many ways if they choose to allow it. I am living proof of that. I am a c-4 c-5 quad, who was able to get enough signal through my cord to allow me to recover a great deal of my physical attributes. However I am still partially paralyzed and suffer chronic pain as a result. Yet because I do not use a wheel chair, I might as well not exist when it comes to this community. I once wrote a post titled, "Red Headed Step Child of SCI's" I can be in a room with another para or qaud, and because they are in their chairs, they get the hand shakes, the pat on the backs, the "your so inspirational, ..." The CRDF even held and is currently holding a contest for "Best Mom on Wheels," also "Best Dad on Wheels," but if you were to look in the fine print, it includes all people with SCI's. Yet it certainly doesn't depict that when reading the name of the contest. There are so many little things that we all can take offense to, or we can learn to just let go. "wheel chair bound, crippled, disabled, retarded, mentally and or physically challenged, etc... These are all just words, and ways to descibe individuals, and at the same time, can be incredibly offensive. So what to do? Just be yourself, know that not everyone is going to say things exactly the way you say them. If you are offended, the pull a person aside and let them know why you found that offensive. But what offends you, might be perfectly fine with someone else.
Ben s7k 3j7: I do find I'm usually the least upset by what anyone say's. Around friends or family anyway. I expect the weird questions and bad coments that I'm sure make people feel stupid afterwards but,I feel we all make these mistakes and let it go. I love shows like family guy but, sometimes they do go abit too far. Getting offended is normal and thats the way it is. Nothing you can do about it. Free country. Freedom of speech and the choice too say it. Well, usually..
Denese: I am not easily offended and frequently use words that others probably find offensive such as "gimp", but wheelchair bound actually does bother me. I am not bound to anything!! I am also offended by what I term silly words that try to be too politically correct such as handicapable. I love your new word for the able-bodied Candace! Pop ups will be in my vocabulary from now on. There is a fabulous song by folksinger Fred Small called "Wheelchair Blues" where he says everyone is just temporarily able-bodied.
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