Why We No Longer Use the “H” Word

by Dan Wilkins

What is it about the word “handicap” that so offends many of us living with disabilities? Within our Disability Culture, progressive thinking has steered us away from using the word “handicapped” as a label or descriptor for someone living with a disability for a couple of reasons. To begin with, contrary to long time societal thinking, it is not synonymous with the word “disabled”. More on this in a moment.Most importantly, it is the very origin of the word that leaves such a bad taste in our mouths. It conjures up imagery that perpetuates archaic misperceptions of the value of people living with disabilities and their potential for contribution to their community and to humanity as a whole.Though I have a Brit friend who argues the truth of this origin, many believe the word comes from Old World England when the only way many with disabilities could survive was to sit on a corner or on the side of the road with a “handy cap” held out for passers by to fill out of pity. A pretty negative connotation. Not at all an empowering legacy, is it? And, sadly, it is not just a part of our distant past...I do not wish to break from the “handicap vs. disability” issue but it is important to point out that this basic premise of projecting pity as a mechanism for exacting funds from the masses is still being used today. If I may rant for a paragraph, children and adults with disabilities continue to be exploited every day, most visibly, every Labor Day when Jerry Lewis does his annual Smellathon, er, telethon. Twenty-four hours of patting and hugging “poor, helpless cripples” until FINALLY, in the last five minutes, through red blurry eyes, hair mussed, sleeves uncuffed, bow tie loosened and akimbo, sweat dripping and sleep deprived, he tells us, with all the apparent (or is that transparent) sincerity of a really bad lounge singer, that we “will never walk alone”. (Hey, Jerry, I’ll never walk AGAIN! and, truth be told, that’s O.K.) He demands that we, the heart wrenched public, give, GIVE, until it hurts. GIVE, so that, for another year, we can walk the street unashamed to look someone in the eye; unashamed that we might have fearful, discriminatory thoughts toward “those people”; unashamed that our society continues to fight equity and access to all it has to offer. Buy the premise, pay the dues and it’s a another year of “no fault insurance”.Jerry isn’t the only one, just the most notorious. There are others. Be wary. Kahlil Gibran said “the gifts which derive from Justice are greater than those which spring from Charity.” There is power in this statement. If you want to make a difference and, at the same time, help put an end to the pattern of pity and paternalization, find an organization that is promoting self-control and Independent living; one whose mission is that of building confidence and ability, awareness and community. Try your local Center for Independent Living. It’ll be money or time well spent. Here’s a site that will show you the Center closest to you.Back to disability vs handicap. Now that we know the origin of the word, we realize that there is little dignity to be found there, except when we look into the souls of those who, over history, wrapped themselves in the label like a banner when there was no other word; who lived, fought and died defending their right to belong in a world trying so hard to eliminate them or hide them away.All this is not to say that there is no appropriate context in which to use the word “handicap” or “handicapped”. There is. Let me explain.I have a disability. I broke my neck in an auto accident in 1980. It is an integral part of who I am and, to some degree, it impacts the way I do things in the world. I only become “handicapped” when I cannot reach a goal.It may be a narrow door, or a set of steps; an inaccessible parking structure or a restaurant with no accessible bathroom. For some it may be no signage or braille menus, no interpreter or service dogs allowed. It may be someone’s attitude out there: “Hey! You can’t come in here! We didn’t vote for the law and we’re not making changes.” or my own attitude: “I’m just a quad...I’ll never amount to anything.”Though I’m not big on continuums, let me illustrate it this way. Two lines. One horizontal. One vertical. They form a big plus sign. (See diagram). The horizontal line represents disability and the (relative, and I stress relative) significance of its involvement and impact on the person, with minimal impact on the left side and significant impact on the right. The vertical line represents the degree to which the external or internal (self-concept, confidence, etc.) handicap limits one from reaching a goal. We’ll put minimal impact at the bottom and significant impact at the top.

Now let me tell you the story of two friends. “Friend A” (not his real name) has Cerebral Palsy as his disability. He uses a word board and head stick to communicate with those who do not understand or speak CP. He uses an electric wheelchair and a chin stick to get around. I stressed parenthetically above the issue of relevance with regard to how we perceive the significance of disability. We, not really knowing Friend A but seeing him on the street, might be quick to place him far along the horizontal continuum of disability, considering him to be pretty significantly disabled. And I would tell you that Friend A’s self-perception would put him much farther back toward the minimal end. I would also tell you that Friend A is just finishing up his degree in Social Work at the local University. Here’s a guy whom most would consider has a significant disability, yet, he’s out there making a difference in his life and in the lives of others. He’s not allowing his disability or society’s low expectations to handicap him. He’s going to contribute to his community. I would say he sits pretty low on the handicapped scale. Does this make sense?On the other hand, I have a friend, “Friend B” (not his real name either). He lost a couple of toes in a farm accident. He walks fine. No pain. No limp. Nothing. Pretty minimally disabled, wouldn’t you think? But can I get him to go to the beach with me, or swimming? Absolutely not. He’d like to but he goes nowhere without shoes on. He won’t even wear sandals. Pretty minimally disabled but, again, it’s relative. He considers himself pretty significantly disabled. So much so that his own attitude; his own self-concept has him significantly handicapped.A final difference: if we were to consider these two continuums over a period of time, we would most likely see that the disability continuum, in most people’s lives, would remain relatively static when compared to the handicapped continuum which would fluctuate with every situation and barrier(s) presented.It is important to understand the context in which to use the words we use. The best way not to offend someone living with a disability, and I often insert the word “living” because we tend to forget that we are all living, breathing, interacting, supporting, pushing, pulling, etc.; basically trying to get from Point A to Point B with as little hassle as possible, the best way not to offend someone living with a disability is to refer to them first as just that: as Someone, as a person, as a teacher, a student, an athlete, whatever they happen to be at that moment. That they have a disability is secondary or even tertiary. People are people. People are not diagnoses, or prognoses. They most certainly are not their disabilities. Their disabilities are a part of who they are, perhaps a tenth or twentieth of who they are completely; affording most of all a unique perspective on the world and one’s place in it. It is not something of which to be ashamed but something of which to be proud.

Daniel D. Wilkins is President and Owner of The Nth Degree, a very progressive nationwide Graphic Design/Silk Screen/Professional Speaking Company specializing in Products, Designs and Stories for the Interdependent Living, Inclusion, Diversity and Disability Rights Movement. Dan's creative work and professional speaking has been done with hospitals, Independent Living Centers (ILC's), nursing homes, private allied health professional organizations, Rehabilitation Centers, Schools and more.