Scholars weigh in
Who's 'disabled?'

Irv Zola said:

By agreeing that there are twenty million disabled, or 36 million, or even half the population . . . we delude ourselves into thinking there is some finite (no matter how large) number of people [who can be termed 'disabled']. In this way, both [in] the defining and [in] the measuring, we try to make the reality of disease, disability and death problematic, and in this way make it at least potentially someone else's problem. But this is not and can never be. Any person . . . may be able-bodied for the moment. But everyone . . . will at some point suffer from at least one or more chronic diseases and be disabled, temporarily or permanently . . . All of us must contend with our continuing and inevitable vulnerability.

-- Irving Zola, near the end of his life

David Pfeiffer says:

If I am talking with a person fairly ignorant of disability -- and I have become very able to smell these people out -- and I want to impress upon them that we are legion, I will say, "Thirty to 45 percent of the population of this country is disabled." That is a way of getting to the discussion of "what is disability," so they will realize that everyone is, or will be, disabled.

If this person is politically active, I will focus upon the number of actual or potential voters who identify as "a person with a disability." This strategy will grab their attention and make them be concerned about disability issues. I can then show them, if they are still listening, that disability is connected to every policy question.

However, the next level of discussion is to convince the person that "disability" is an ideological term. To name a person as "disabled" is to give them an inferior position. In our society people identified as disabled are second-class, third-class, or even worse-class citizens. We live in a constant state of discrimination. Identifying oneself or another person as a "person with a disability" is an ideological act. There is no other way to describe it.

Being a "person with a disability" is a damning thing and not everyone can or wants to be damned. I do not want to be damned. I do not care about being "disabled" in the sense of impaired -- everyone is or will be impaired. Hopefully some day being impaired will not mean being damned, but it does today in our society. But knowing firsthand (and sometimes crying from the pain) what it means to be disabled/damned, I can not condemn anyone who renounces the label "disabled." I want to hug them and acknowledge their pain, but they (almost always) can not even think of such a possibility.

They go their way with my blessing.

David Pfeiffer, Ph.D., a policy analyst specializing in disability policy, is Resident Scholar with the Center on Disability Studies at the University of Hawaii at Manoa.

Carol Gill says:

I agree with activists who believe that "disability" is mostly a social distinction -- one that is triggered by some physical/ sensory/mental/ functional/cosmetic difference.

How much of a difference is significant enough to count as a disability? That's usually decided by the majority culture tribunal. What is barely noted in some cultures can be a great stigma in another (e.g., being born with a missing digit). . . . I believe disability is a marginalized status that society assigns to people who are different enough from majority cultural standards to be judged normal or defective in mind or body. . . . .

[But] what about people who say they are disabled but society does not so label them? What about things like alcoholism, chronic fatigue, compulsive behaviors? Conditions like these seem to be judged by society as either too insignificant or too voluntary to be real disabilities. Consider also the borderline conditions, like eyeglasses, limps, the fingertip lost in a factory accident, the gradual hearing loss with age, the so-called "slow learner" at math. These are the differences most people downplay out of embarrassment or fear of social devaluation. They are also the differences some pull out of their back pockets when they want to prove that there is a continuum of disability or if they have something to gain from being disabled: a parking space, priority treatment, a place of power in a disability organization. . . .

It's possible to have a disability without society's agreement. Society may simply be too ignorant about some disabilities to include them in the classification. If the public knew how debilitating, involuntary, and physiologically-based such conditions as alcoholism and chronic fatigue were, it's conceivable these would be viewed more generally as disabilities. The critical issue seems to be whether they affect life functioning or are weird enough by society's standards that they would be labeled "disabilities" once they were fully revealed. Anything potentially labeled as a disability by society is a disability, in my book. . . .

Is it a disability if it's invisible? If it's disabling enough to affect your life, it's also potentially visible. Your learning difference, your fatigue, your pain or depression could all be revealed under certain circumstances. You know you have a "real" disability when you know society will label and marginalize you once your difference shows. I am increasingly tired of disabled people who don't believe the hidden disabilities of others are significant or "real" disabilities. . . .

From "Questioning Continuum," (The Disability Rag, March/April 1994) reprinted in The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of The Disability Rag, available from The Advocado Press (PO Box 145, Louisville, KY 40201) for $18.95. Carol Gill is with the University of Illinois at Chicago.

The Disability Rag said:

There is no real line where disability leaves off. As soon as it's pinned down, we find an exception. In truth, disability belongs to all of us. If not now, it will find us sometime in the future; or else it has been part of our past.

No one has ever really succeeded in defining disability. "Or is regarded as having an impairment," says the federal definition, part of the 504 regulations.

All oppressed individuals have felt the feelings of disability. The psychic pains of disability are often more real than the physical ones: Fear. Anger. Embarrassment. People are staring. We look funny and can't help it.

We are not allowed. We are to be patient and wait. We must be grateful, and not ask for more than we should have. The feelings belong to disabled people; but they do not belong to us alone.

We can't afford the luxury of being "more disabled" than someone else. More disabled, less disabled: it shouldn't count anymore. What should count are the feelings. And we have all had them.

We will begin to be successful as a movement only when we begin with this understanding of what disability means.

We cannot continue to debate whether or not someone is "disabled enough." We must begin to understand the oppression. We must unite around that.

-- The Disability Rag, July, 1983

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