A Practical Definition of Disability – Who Needs It?

By Michael Bullis

Ever since I began my imersion into disability there have always been definitions.  Typically they are legal definitions which become useful when you’re trying to apply for some service or another.  Whether it be Social Security Disability Insurance or the employment provisions of the Americans with Disabilities Act, each law has unique and necessary definitions of disability.

As a practical matter though, I think there is a need to define disability because, by defining it, we can determine how to manage it.

Rather than annoying you with lengthy dictionary definitions for disabled, or disability, let’s just think about the word for a moment.  When you’re using a particular service on the internet you are often asked whether you want to “enable” or “disable” specific functions.  My banking site recently asked me whether I wanted to “enable” online bill-pay.  I was informed that I could “disable” the service at any time.

So, when the average person hears the word “disabled” he or she naturally and correctly thinks about things that are working or not working.

I am considered physically disabled because my eyes don’t work–I’m blind.  Somebody in a wheelchair is considered disabled because perhaps her legs don’t work, or at least don’t work in such a way as to be useful for walking long distances.

So far, so good.  I am not one who believes we should try and ignore that we are unable to use certain senses or body functions that most people take for granted.  That is what disability means–the inability to engage with senses, bodily functions, or, mental activities the way “most” people do.  And, disability, by it’s definition, is a limitation.  Disability limits or impairs ones ability to perform major life activities that one could perform “normally” without the disability.

If that is all there is to disability though, then there is little purpose for a disability movement or disability rehabilitation programs.  If what we are to do is simply accept what disability has done to our lives and move forward, limited, less capable and unable, then we should simply be greatful for society’s kindness.

But, of course, that is not what disability really means.  Beyond simply defining the physical and mental limitations that make up a particular disability, we humans have developed a series of alternative techniques to minimize or eliminate the disabling effects.  Let’s describe some alternative techniques.

A blind person can’t read print so reads Braille.  That skill is an alternative technique which overcomes the disabling effect of vision loss.

A person without legs might use a wheel chair.  Again, this is simply the use of an alternative technique to situations where legs would ordinarily be used.

We could say that to the extent that a person develops alternative techniques to do the things he or she would do “normally” without the disability, to that extent the person has “overcome” the disability.

So, regarding my blindness, my goal is to develop a series of skills and attitudes that, when taken as a whole, leave me able to accomplish the daily tasks of family, community and work life with competence.

Because I can’t see my computer screen I need an alternative way to know what it says.  So, my computer talks to me.  What’s more, it can talk at upwards of 400 words per minute.  That’s good, because, I’m a bit slower at finding things on the screen, so the extra reading speed helps make up for that slowness.

And so it goes.  Somebody with one arm must develop a series of techniques to do what he or she would do with two arms.

When put this way, disability almost sounds easy.  Determine what your set of impairments is and figure out what alternative techniques you’ll need to use to become competent at your life tasks in the home, community and at work.

Usually the process breaks down early on.  The first break down comes because the assumption is made that there simply aren’t any, or enough, alternative techniques available to mitigate the disability effectively.  For me the line would be, “I’m blind.  That means I can’t see.  That means I will never be equal to those who can see.  Most people who are blind are unemployed and I just need to accept my limitation.”

But of course, that isn’t the reality at all.  With some training in the alternative techniques of blindness–use of Braille, the cane and computers, along with a hearty dose of positive belief, I can do what I need to do.  I can raise my child, be a part of the neighborhood association, and function as the Director of the IMAGE Center with competence.  Surprisingly, blindness has little to do with any of it once I’ve learned the alternative techniques I need to have.

The challenge for the person with a disability and the professional in the disability field are surprisingly similar.  They are to identify the alternative techniques necessary for that person to become competent at home, in the community, and at work.  Each party has the parallel goal of cleaning out attitudes that interfere with the learning or development of the alternative techniques necessary.

We humans are very clever.  We’ve made a rather large mark on this planet of ours by overcoming apparent disabilities.  A case in point.  Humans can’t fly.  From the birds point of view we are limited.  We walk around on the ground, for the most part, on two legs.  This creates difficulties for us.  We can’t run away from enemies by flying up in a tree.  We can’t see long distances by getting high in the sky.  On and on it goes.  Not flying is a serious limitation which we have worked hard to overcome.

We developed the heavier than air flying machine–commonly called an airplane.  Now we fly further and faster than any bird ever could.  We took our apparent disability and found not just an alternative technique, but a superior alternative technique.

I would note however that the history of the development of the airplane was full of detractors.  People said it couldn’t be done for numerous reasons.  Science was the main argument.  Heavier than air flying machines would have to defy gravity so couldn’t possibly work.

It’s interesting that the same things happen with disabilities today.  When you become disabled the first thing people want you to do is “accept your limitations.”  As though this is somehow noble.  What they really mean is that your life of competence is over so get used to a life where people wait on you and where you do far less than before.  And, what they also mean is that there simply aren’t any, or enough, alternative techniques available that you can learn in order to become competent, so, “be realistic” is usually code for “live a less than successful life.”

Those of us who have disabilities know something far different.  We know that the techniques are out there.  We know that with some investigation we can find somebody who has solved virtually every problem we face.  What we often lack is the connection with those who have solved the problems.  We spend far too much time reinventing the wheel rather than using the wheels already developed.

We also know that it isn’t the disability that keeps us down, it’s the attitudes we and others have about it that keep us down.  I’m not suggesting we engage in pollyanna thinking that says, “Be cheerful and happy.”  I’m referring to a hard headed set of thinking skills that help us create positive solutions to disability created impairments.  This problem solving mentality is some times referred to as a positive attitude, but, the positive attitude is far too often misunderstood to mean “feeling good” rather than “thinking about solutions in a positive manner.”

So, in conclusion, far from being just a legal definition, defining disability can have a practical impact on how we move forward as individuals and as a societty.  If we understand our task as being the development of alternative techniques to overcome the impairments caused by disability, then we have a very clear mission.  And, if we understand that the mission has been shown to be accomplishable rather than impossible, we will be far more likely to find the solutions already invented and to invent ones of our own when necessary.

Impression Management

The Halo Effect

Impression management requires that people with disabilities learn to recognize and counteract the “halo effect.” In essence, the halo effect says that people with visible disabilities are angelic creatures who, as my grandmother use to say, “wouldn’t say dirt if they had a mouth full of it.”

In other words, we’re somehow above the worldly creatures of Earth. We don’t drink, smoke or swear. We would never steal, are always polite, and we’re cheerful. Indeed, one often hears people say, “But he’s so happy.” As though being happy is somehow, in and of itself, God’s make-up call for the disability in the first place.

The problem with this halo effect, or as I call it, “the innocence effect” is that it really limits your potential to meet people, make friends and get jobs. Imagine how you would feel if the person you were next to is somebody very close to Sainthood. Is this the kind of person you’d want to take out for pizza? Ok, Ok, so maybe you’d take St. Francis out to pick some flowers, but even then you’d keep expecting the birds to land on his shoulders. How disconcerting.

Saints just aren’t the folks that people say, “This person reminds me of myself. He’s comfortable to be around. Just the kind of person I want to work on the job with.” No, Saints just aren’t needed in the workplace.

What you’re striving for when you meet a potential employer is her going away from the meeting saying, “Now, that’s a person I feel comfortable around and can communicate easily with. Seems to me she has some real practical problem solving ability and can contribute positively to service growth.” If she feels like you’re a Saint it just won’t happen.

Let’s first give a few guidelines for how to recognize when somebody just might be treating you as though you’re a saint.

1. If the person speaks very softly, it’s a possibility. They are kind of acting as though they’re in a church.

2. If the waitress offers everyone at the table a choice of wines and offers you a list of soft drinks, you’re safe in assuming that your sainthood is close.

3. If a group of kids are yelling and laughing with one another until you get close, at which time they become very quiet, you just might want to consider that you’re being held pretty high on a pedestal.

So, here are a few techniques for counteracting the “halo effect.”

1. Decide whether the person you’re with is a “darn” or a “damn” person and use the least offensive word. That is, if you’re in a trucking office and the person is wearing a t-shirt you can safely use a sentence with damn in it. If on the other hand, you’re applying at the Catholic Charities office, you need to stick to “darn.” In either case, this establishes your lack of saintliness. Don’t try phooey, shucks, or gee-whiz. These will cement your sainthood.

2. If you’re at a reception in which alcohol is served, and your values allow for it, you might consider carrying around a drink that looks alcoholic, such as a bottle of beer. It’s a prop that sends that same “I’m not a saint” message. I’m not saying you should drink nor am I suggesting you should do this one if it’s against your values. What I am suggesting is that you must find a way to establish yourself as an ordinary person in the minds of those who think you are not of this Earth.

3. Sit in the back three rows of audiences when you can. This is where troublemakers and rebels sit so although it isn’t a strong message sender, (many people not of the troublemaking variety also sit there), it does add to your general image of human being.

4. You might consider such things as: multi-colored hair, nose rings, bellybutton rings, Etc. My only caveat with these devices is that although they do send messages of, “I’m not an angel,” they also offend some older people to the point that they may not see your other fine qualities. But, all of life is about mixing and matching our wardrobe for the right occasion. So, think about it and be your own judge. Some modern wardrobe accessories serve to send the message that you’re in touch with current fashions. Others say, “I’m a rebel.” Still others say, “I’m sexy.” All of this is important in its own way to help establish you as a person who is a part of modern society, not isolated from it.

5. Carry a copy of Rolling Stone around with you in case you need to pull it out and send a quick message of what, I’m not sure, but certainly not sainthood.

Please, add your methods of impression management for the halo effect in the comments section, so we can teach them to others. These elements of impression management are critical to your success in getting that job. When you go into that job interview there is little doubt of your underlying qualifications. In other words, you probably have the technical skills or you wouldn’t be there. Although there are other factors that play into an interview, the one that is essential is “chemistry.” Do you and the interviewer develop a chemistry of shared experience? If you do, the likelihood is that you’ve taken a big step toward the job. If not, you will seldom get the chance to show your skills.

So, send along your own techniques. Until then, I need to remove my nose ring, run this darn thing through the speller and send it off while the stylist finishes punking my hair.


The Reversal

I was leaving our building the other day at Hampton Plaza and encountered a woman in the elevator who decided that I needed help.  I’m blind, so, carry a white cane and often folks decide that this must mean, without any particular factual basis, that I need help.

First she wanted to make sure I got in the elevator without problems.  She ran ahead of me and said, “The elevator is this way.” And, as I approached the door, “It’s right here.”

As the elevator headed down to the first floor I puzzled over what I might do to educate her, or cause her to at least think a bit.

I could, I suppose, invite her up to our offices and give her a thirty minute education on how to recognize when somebody needs help.  I could have spent the same thirty minutes with a complex explanation about disability and that it’s insulting to assume that people need help simply because they have a disability.

Taking a shorter tack, I could say, “You know mam, I’m blind, but that doesn’t mean I need help and you shouldn’t assume that it does.”

Experience has taught me however that the result is hurt feelings, “Well, all I was doing was trying to help.  He’s really got a chip on his shoulder.”

So, the elevator headed down and I pondered.  Finally I decided to try for a reversal of positions.

When we got out of the elevator she said, “Where are you going?  Let me help you find the door.”

I actually looked away from her during these comments, acting like I didn’t hear her.  Then I turned toward her and said, raising my hand as though to put it on her shoulder in a kindly way, but not actually coming anywhere near her or her shoulder, “Ma’am, can I help you find something in our building.”

She stopped in her tracks and one could feel her wheels turning.  She became speechless.  Finally natural politeness took over and she said, “No thanks. I‘m fine.”

I smiled and wished her a good day, walking ahead of her and out the door.

The point of this story is to say, next time you’re in a situation where somebody makes the assumption that the “dis” in the word disability is what defines you, you won’t have time for a training session on disability etiquette, so, try the reversal technique.  We’ll have more of these in future blogs.

Oh, and, if you aren’t a person with a disability, please understand that we aren’t putting down your efforts to help us, but, most of the time, let us ask first.

Michael Bullis is the Executive Director of The IMAGE Center.