I knew her intentions were good, but she was out of line. So was your lady of the blanket. By making decisions for us, these two women were making a false assumption: that people with disabilities can't be in charge of their own lives and therefore need others to take charge for them.
Is it wrong for you to resent this myth and the behaviors that result from it? No. In fact, I'd be concerned if you didn't resent them. The question is: How do we respond to people who rob us of our autonomy? The answer, I think, is closely connected to your first question: "Why are people always making decisions for me?"
When that decision-making stems from well-intentioned ignorance, I think we should respond firmly but tactfully, perhaps with a touch of humor. You might say, "No, thank you. I haven't needed a blanket outdoors since my second birthday!" If the person responds politely to your statement, you might take it one step further. "You know," you might say casually, "many people think that wheelchair users are ill and can't take care of themselves. I'm happy to tell you that I'm just fine." Your words may change her life.
When that decision-making stems from mean-spirited prejudice, I feel entitled to get as angry as the next guy. So, if you're behind me on the ticket line when an usher announces, "You're not coming into this theater with that oversized wheelchair," better take cover!
- Chava Willig Levy
- a cripple
- differently abled
- none of the above
Why? Because I think words matter and shape our attitudes in more ways than we'd care to admit. Take the word "cripple." The most appropriate use of the word "cripple" that I ever came across spanned the front page of my local newspaper: "BLIZZARD CRIPPLES THE CITY." "Finally!" I remember exulting, "Someone figured out what 'cripple' means!" And what is that? Brought to a standstill. Stopped in its tracks. After all, according to the Merriam-Webster Dictionary, the Old English root of cripple is creep. I don't know about you, but my disability - although severe - has not stopped me in my tracks.
And in case you think my word critique is a symptom of oversensitivity, check this out: The dictionary defines the verb, to cripple, as "to deprive of capability for service or of strength, efficiency, or [get this] wholeness." Well, if that's what cripple means, they've got the wrong customers if they think the word applies to me or you!
Now, on the other side of the spectrum, we've got "special." Unlike "cripple," "special" sounds like a compliment, doesn't it? Not so fast! Turning to the dictionary once again, we find "special" defined as "distinguished by some unusual quality; especially being in some way superior." Yes, that does sound like a compliment, but is being paralyzed, or deaf, or blind a form of superiority, in and of itself worthy of a compliment? I certainly don't think so. Of course, neither is it a form of inferiority, worthy of an insult! What we have here is a euphemism, the substitution of an agreeable or inoffensive expression for one that may offend or suggest something unpleasant. Well, I don't know about you, but since my disability is neither offensive nor unpleasant, I find the euphemism offensive and unpleasant! (Of course, the same critique applies equally to "special," "challenged" and "differently abled.")
This leaves us with "handicapped" and "disabled." They are, by far, the least problematic on our multiple-choice list. The more politically correct word these days is "disabled," why, I'll never know. Think about it: You turn on the traffic report and you hear, "Avoid the Tappan Zee Bridge; a disabled tractor trailer has caused a 90-minute delay." Now think again: You turn on the news and you hear the political commentator remark, "Joe Brooks may be short, fat and bald but he never let those drawbacks handicap him in the mayoral race." The way I see it, if something is disabled, it can't budge. If something (say, a horse) or someone (say, you) has a handicap, it (or you) may be working against resistance or proceeding more slowly, but it (or you) will get to the finish line.
What about "none of the above"? Well, if I had to fill in that blank, I would use your very own words! Take a look at the opening sentence of your question: "I'm in my forties and, for most of my life, I've used a wheelchair to get around." What did you do here? You avoided what I call definitional labels (words that define a person) and opted for a functional label (a word that describes how that person functions). At the crux of all this is the difference between the verb "to be," which defines what a person is (a cripple, special, handicapped, disabled, challenged or - heaven help us! - differently abled), and the verbs "to do" or "to have," which describe what the person does (gets around with a seeing eye dog, walks with a limp, uses crutches, reads at a second-grade level, communicates in sign language, etc.) or has (a disability, epilepsy, hemophilia, muscular dystrophy, cerebral palsy, Down Syndrome, multiple sclerosis, etc.).
A word of warning: This model works for me, but it doesn't mean that I never use words like blind, deaf, mentally retarded or even disabled and handicapped. Those words are perfectly fine, as long I haven't forgotten the person linked to them. For example:
- My neighbor, David Ross, is mentally retarded (yes).
- The mentally retarded are represented on our block (no).
- My boss, Cheryl, is blind (yes).
- The blind should be hired at our firm (no).
Honestly, what difference does it make? Do words really matter? I look forward to your thoughts on the subject - honestly!
- Chava Willig Levy