Return to main SPIN page

What’s wrong with whom?
By:Bill Dingfelder

What is it about persons with disabilities that makes the rest of us so nervous? I’m nominally “normal:” I have a routinely-functioning body, I’m not bad looking, I have a sharp mind, and I possess a collection of neuroses that, while impressive, is not yet off the scale. Nevertheless, for as long as I can remember, and even to this day, I’ve felt initial discomfort when seeing or meeting a person with disabilities. This is ironic, to say the least: my own mother got polio when I was born, and she has consequently walked with a limp throughout most of her 72 years. Yet, growing up, I didn’t see her as a person with disabilities: like any other child, as long as she fed, clothed, and hugged me, she was functional enough.

Others were different, however: One of the earliest memories I have was of regularly seeing the blind man at Tampa’s Central Post Office, circa 1957, who ran the concession stand. I was able to marvel at how he could make change by sense of touch, how he remembered me by my voice alone, and how he and my father, as native Floridians, were warm and friendly with each other. Still, I dreaded seeing that shopkeeper and I hid behind my father when I saw him. Even at the age of 10, I kept my distance: I was only courteous enough not to be rude and get into trouble with my dad.

The first time I met Michael Cohn was at my own wedding: my wife, Laura, and Michael are first cousins. When I saw Michael, I was discomforted by the contortions of his face, his entrapment in a wheelchair, and his speaking difficulties, all effects of the genetic illness he has. To be sure, my feelings of discomfort have greatly lessened over time, and I’ve learned to see what Michael and I have in common: a warped sense of humor, for example. Be that as it may, I still feel myself get tense when he phones, and, even after seven years, I’m still embarrassed to ask him to repeat words or sentences. (Michael, for his part, doesn’t seem to mind much at all). In short, I wonder how much I’ve changed from being that scared little boy in the post office.

What is going on with me? More to the point, what’s going on with so many of us, for I bet that the majority of “normal” Americans have had similar reactions and experiences in interacting with persons with disabilities. I think there are a number of reasons so many of us feel uncomfortable:

1) I’m Number One: We are a particularly individualistic culture, and we live in a nation where realizing the “American Dream” means being successful on one’s own. We place far less emphasis on groups, or on family, than do many other cultures: for us, our individual actions and beliefs are what matter. (Just think of the lines of our success songs: “I did it my way,” “If I can make it there, I’ll make it anywhere,” “I am strong, I am invincible, I am woman.” I, I, I: not a group or support system in the bunch.) So, if we buy this cultural paradigm, then in order to have the best chance of “succeeding” in our culture, each of us needs all of our equipment: our physical, mental, and psychological abilities. When we see someone with disabilities, we are reminded about how vulnerable we are, how little control we really have. We are forced to face the fear that, through life’s randomness, we may join their ranks and “be out of the game.” When we first meet a person with disabilities, many of us think, “There but for the grace of God go I.” However, when you think about it, that is just another way of saying, “Thank God it is that person, not me,” which is not only a selfish thought, but an individualistic thought as well.

2) Them, not us: The flip side of our individualism is that, when we do think about our membership in groups, we often experience those groups in terms of concentric circles: we may see ourselves first as a member of a circle that involves our family and friends; then, perhaps, as a member of a particular ethnic or religious group; then as part of a larger circle of people in our town or state; then as a citizen of our country; and, finally, as a member of the human race, a citizen of the world. In this system, our allegiance to those in the “inner circles” supercedes our interest in other people who occupy the “more distant” circles. So, when we meet someone who “isn’t like us,” we subconsciously, or even blatantly, relegate him or her to the more distant circles. This system of “in-group” and “out-group” can have positive aspects: it can create family cohesion and civic pride. In its uglier aspects, though, such a classification system can lead to prejudice or intolerance of “the other,” and that “other” may well be a person with disabilities.

3) The bold and the beautiful: In our country, almost any advertisement, any beauty magazine, or any popular movie emphasizes beauty, strength, sexuality, and youth. We are a culture in denial: we flee from the effects of aging; we abhor a growing belly or a graying hair; we feel pressure to perform physically and sexually; and, most of all, we idolize the young and denigrate the old. Why? I believe because of the subconscious fear of death: any reminder of life’s aging processes reminds us of life’s end, and our culture is more afraid of death than many other cultures. Similarly, when we meet a person with disabilities, we are reminded, on some primal level, of the mortality of the flesh, the unstoppable progression of time. Disabilities, like aging, remind us on some level that life is finite, that life is provisional, and that life can change. And that realization terrifies us.

In the end, of course, it is we, the “abled,” who are missing out by retreating or being fearful of persons with disabilities: we are losing the opportunity to make new friends, to learn from new business colleagues, and to understand another way of living a full, and fulfilling, life. I am optimistic, though: I like to think that insight can be the beginning of change, and that by facing your fears you can overcome them. In this way, by trying to understand my attitudes and change my behaviors, I, too, can grow; I, too, can struggle to overcome my irrational fears; I too, can try to change my entrenched behavior. I, too, can deal with my disability.