Director's Digressions

by Sheryl Burgstahler

We completed our fourth DO-IT Summer Study session this past August. Thirty-eight DO-IT Scholars participated as campers; four Ambassadors worked as interns. They represented twelve different states. We all worked hard, learned a lot, and ended up exhausted!

One plus in the DO-IT program is we don't lose contact over the year because we're all on the Internet. Serious and not-so-serious conversations help create a strong support system for all involved. To give you a sample of the types of communications that take place throughout the year, I'll share a part of one conversation thread about terminology used to describe people with disabilities. It took place on our DO-IT discussion lists for Scholars, Ambassadors, and Mentors this past spring. Below I've listed parts of some of the messages; some comments have been edited to save space.

The term "differently-abled" drives me nuts. It strikes me as a phrase coined by non-disabled people who were trying to be politically correct but really had no idea what they were talking about. Some non-disabled people tend to think, also, that a term referring to a deficit, rather than a difference, is offensive to us. I don't know about everyone else, but I know I'm not offended by it. I do still prefer "disabled" to "handicapped"; however, my mom still uses "handicapped". I always tell her, "Handicaps are for bowlers and golfers..."
In fact the word "disable" comes from the union between the Greek prefix "dys-" that means, "in a different way" plus "able".
The word 'handicapped' comes from the phrase 'to beg with cap in hand' and is from an era where that was all people with disabilities were allowed to do, or could do. I really don't like the concept of being politically correct (PC). My personal guess is that PC was created by a bunch of people who felt guilty about how they treated others. Bottom line is as long as it shows respect for the person, that's cool. I prefer "person with a disability", "person with...", etc. The point is the person is coming first and is separated from the disability.
The phrase "differently-abled" annoys me. Granted this is total personal preference, but my belief is that there is nothing inherent in a disability that makes us better in something else. Besides, the "differently-abled" term tends to provoke the "supercrip" image.
See, what the problem is with these names is that they're to get us all into one group for convenience's sake. But for each of us, there is a term that's true. I'm blind for example. If you say I'm blind, I state, "Yes I am." But physically challenged, disabled, handicapped...Hmmmm.
I have a bumper sticker on my car that reads, "The real disability is attitude." You are right! The day we stop needing the labels is the day it will truly be inclusion. I sometimes forget I am deaf because the "silence" has become so normal and on those days I am startled to be labeled. Let's work for that day when we are people first and not the labels!
If people feel it's necessary to describe me, I prefer my name and "who is physically challenged". Too many people associate cerebral palsy with mental disabilities [which irritates me!].
Does anybody find that people who aren't disabled spend way too much time thinking up new ways to call "Us?" In the 70's and earlier most of us were called "cripples". That seemed a little too cold so throughout the 80's we were called "handicapped" or "disabled." But now in the (PC) 90's we've seemed to gain the phrase "physically challenged." So that brings me to my question: do you guys feel any different when any of these names are used?
I feel differently when different labels are put on me. When someone says, "What disease do YOU have?" It hurts like hell, no matter how much self worth I have or how good I know myself.
No, it doesn't hurt or change anything when I'm called handicapped, physically-challenged, or even disabled. No, I don't think I'm any of these things. However, our society has norms that no one can and ever will live up to. Therefore, we must categorize the way people don't fit into the norm. We have names for the groups of people with different skin colors. We have names for the people of different religions. We even have names for the groups of people from different countries. The human mind must categorize things. I can't think of every single item in its scope as an individual entity, because it would take up too much processing, and way too much storage space. (Yeah, yeah, I'm a computer science geek :) )
Yes, it's not nice when someone walks up to you and says, bluntly, "Hey, what's wrong with you?" But remember that this person is curious. My experience has been that if you tell them about your disability they are sometimes actually interested. Granted, you have to keep it on a low level, no scientific jargon and all that, but if you educate one person about your disability, dispel one rumor, isn't it worth the anger at the bluntness of the question?
That's what I was trying to say earlier. I guess it didn't come out right. We must categorize people, although it may sometimes hurt who we categorize. Yes...it is still worth it because that one person will feel nicer to the next, but it's still frustrating when it seems like everyone feels the need to be rude, ask, or stare.
Being labeled might not change who you are, but it might affect people's attitudes toward you. The extreme example is that "cripple" to me has a very negative connotation. I don't think there is anything wrong with the term "handicapped". After all, any sort of disability is a handicap in certain ways, but that doesn't mean you can't figure out ways around the handicap. For example, as a blind person, I can't drive, but I can take the bus, walk, take a cab, or get a ride from someone.
Well, I don't really think of this too much. I guess I just say to them or think, I am who I am. I don't think of my disability or whatever you want to call it at the time. I really don't think of it at all unless someone brings it up.
Well, as a lot of you were saying, you weren't bothered by the labels. I'm not either. I just don't like them. I'm a person like everyone else and have my problems. We can get help if we need it. We just don't have to make a scene out of it.
Actually, this reminds me of how one day I was walking through campus last year and I suddenly realized that I'm technically a minority. I was shocked!!! It's just so weird to think that someone somewhere would consider me to be that. Because I don't. *shrug* Very strange.
An insight that people who get carried away with labeling need to catch is that we are all partially disabled, whether our disability is being hair growth impaired, having a crippled tolerance perspective, or just being blind to the feelings of our fellow travelers.
People who use labels to put others in a frame of reference (A BOX) that helps make their world make sense.
A couple of conclusions that I've come to are these. First, we "label" things so that we CAN talk about them. That is the purpose of language -- to identify people, places, things, ideas, and feelings. If we had no term to describe a person who has a disability, we would not have the Americans with Disabilities Act, this discussion list, or any of the other access instruments that we've all seen develop in the past several years. I don't think the problem is necessarily in the language, but rather in the negative feelings that may be behind the language. Humans have to communicate, and we do it most often through language. Identifying our thoughts and objects and even people as clearly as possible is a good thing. Using language to discriminate or be cruel is a bad thing.
I'm simply [name 1].
I've been watching the responses to this "label" deal for several days now. Not until I read your response did I get this thought - you know when you said, "I'm simply [name 1]. I only hope the world can someday come to that same attitude about all people." Well, it hit me that I don't hold much hope for that. The world, as I know it today, thrives on labels. And this is one area the world isn't prejudiced. We've got geek, nerd, grunge, cool, old, stupid, woman, dude, poor, rich, street, queer, black, yankee, hick, red-neck, deaf, dumb, etc., etc. It seems that if there weren't labels - no one on this planet would know how to talk about someone else. I'm with you, [name 1].... just call me [name 2].
Persons with disabilities is the term I use most, but I have discovered something. Yes, I am blind, but most people I meet have a disability. Not in the way that most people think of disabilities, but in a different way. Some people have such a large chip on their shoulder that this is a disabling condition. I've met people who were so egotistical that this caused major problems in their life.
I guess what I'm saying is that I believe everybody has a disability of one type or another. This may be a little radical, but it helps me understand my position in society. I'm right in there with everybody else. Look for people's strengths, not their weaknesses.
Bingo. That's just what I mean. We need to be remembered for who we are, not what is wrong. If that would be the case, things would be pretty scary. Need I say more?
It is not impossible, but difficult to teach people to be more sensitive and understanding to how we feel when they give us different labels. But, I don't blame anybody if they don't treat me the way I want to be treated, because I know that they are not in my shoes. They can never have that mental approach where they can see or feel what I want them to see or feel, because they don't experience what I do, and this is their disability. I have a beautiful life to spend. I have so many goals to achieve and dreams to seize. I am on my way to success, I have no time to stop and hear what they think I am, because what they think of me is none of my business.

And, this was only part of the thought-provoking conversation we had about labeling. As for me, just call me an NDA (Not Diagnosed with Anything) - for now, at least.

January 1997

DO-IT Newsletters

DO-IT search

DO-IT home page