The language we use is important. Intuitively we always know this, even if we don't allow conscious reflection of word choices to impact what we say, when we say it, how we say it. If we get called on it, we may choose to be defensive of our choice, assert it's our right and say that our language choice is the other person's problem. Freedom of speech and all that. We see this play out daily on the internet in the autism community, in our own daily lives.
We may not admit it, but it plays out in our interior life, as well. Our perceptions and our language change with time, experience, exposure. How we describe ourselves matters in ways we may not fathom.Yes, other people's descriptions of us have tremendous impact on how we are treated, how we are perceived, and on how we internalize this and let it alter us. Our internal dialogue with ourselves is vitally important in how we construct the narratives of our lives, how we move through our reality, the ripples we send out.
In 1986, Nancy Mairs wrote an essay called "On Being A Cripple" which deals with her preference for the word cripple: "I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are "handicapped" and "disabled." I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I'm not sure what those motives are, but I recognize that they are complex and not entirely flattering. People--crippled or not--wince at the word "cripple," as they do not at "handicapped" or "disabled." Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates /gods /viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger."
Intentionally choosing a descriptor for how multiple sclerosis effects her allows Mairs an element of control and provides her with her narrative. If others see her as a "tough bird" and as someone who "swaggers," then she retains power. It takes, I am sure, a serious amount of courage and flat-out determination to continue to move forward through a debilitating condition that robs one of her functionality, her strength, her vitality. Brass balls, in this case, come in handy. Sheer dogged determination does as well. I don't struggle with this level of impairment, but I have my own issues with health, things that leave me bone-weary and bitchy. I have, though, good models of how to move through even greater adversities with grace, humor, and the occasionally cursing, so I know I am fortunate, and I take care to remember, I ain't got it too bad.
Mairs, in choosing her descriptor, in choosing to talk to the medical field and help them, in choosing to see them as helpless in their ability to help her and others like her, maintains power and control over her situation. She writes, "Too few doctors, it is true, treat their patients as whole human beings, but the reverse is also true. I have always tried to be gentle with my doctors, who often have more at stake in terms of ego than I do. I may be frustrated, maddened, depressed by the incurability of my disease, but I am not diminished by it, and they are. When I push myself up from my seat in the waiting room and stumble toward them, I incarnate the limitation of their powers. The least I can do is refuse to press on their tenderest spots."
By showing compassion for caregivers, it allows Mairs control of the situation and it softens the frustration that caregivers will feel, especially when they are unable to mitigate Mairs' pain or crippling. It cannot be an easy road to take, and I suspect, that over the years, it is not one perfectly maintained, but it is an important tool to coping adaptively and helping those around you do so as well.
Mairs, in choosing to focus on being crippled instead of disabled is able to push back, to declare "I am not a disease. And a disease is not--at least not single-handedly--going to determine who I am, though at first it seemed to be going to." Semantics do matter, and it's something she calls attention to towards the start of her piece, "First, the matter of semantics." She goes on later, in this essay, to define these words she rejects in favor of cripple:
As I read this essay, immersed myself in it in preparation to teach it, I wondered how had her perceptions changed over time. Had she continued to prefer crippled as time passed and the disease progressed? Had her attitude regarding the why of it all changed? She ends this essay with an upbeat note: "If I could make a cosmic deal, whom would I put in my place? What in my life would I give up in exchange for sound limbs and a thrilling rush of energy? No one. Nothing. I might as well do the job myself. Now that I'm getting the hang of it.""Disabled," by contrast, suggests any incapacity, physical or mental. And I certainly don't like "handicapped," which implies that I have deliberately been put at a disadvantage, by whom I can't imagine (my God is not a Handicapper General), in order to equalize chances in the great race of life. These words seem to me to be moving away from my condition, to be widening the gap between word and reality. Most remote is the recently coined euphemism "differently abled," which partakes of the same semantic hopefulness that transformed countries from "undeveloped" to "underdeveloped," then to "less developed," and finally to "developing" nations. People have continued to starve in those countries during the shift. Some realities do not obey the dictates of language.
Did this snapshot in time, this encapsulation of a manifesto that she would swagger, hold? And can we really know based on an essay here and there the entirety of a person's existence, how well they really accept their fate, or do we only get what they want us to see?
In 2002, Mairs and her husband were interviewed for PBS's "& Thou Shalt Honor." Is the swagger gone, sixteen years into it and where has she come in her descriptors? It has not been an easy road, certainly, and this is reflected when Mairs writes, "I mean, to be as helpless as I am, means that it would be easier to die. It would be easier for everybody, if I just died. If we're talking ease, and in our society ease is a very great value, for it to be easy. If they get hard, tough, then we think something's wrong. There's something sick about it, there's something the matter and we have to do something to make them easy and comfortable again."
She has dark times, and admits "there have been times when I've wanted to be dead, and several times when I've tried to be dead. And I'm pretty glad that it didn't work, most days. Most days I'm pretty glad to be here." The swagger, perhaps, is gone underground on somedays, less visible, as her descriptor of cripple has come to be replaced with one of disabled.
Mairs appears to have come round to accepting disability as part of who she is and reflected on how it can be of use to raise awareness: "That's become built in to who I am -- to be open about my disability and willing to remind others even at the risk of embarrassing them -- and they do tend to get very embarrassed if they do something heedless."
While time may have reduced the swagger, it has extended compassion further. How do you go about increasing accommodation for disability? Mairs offers this use of language: "And that's part of the reason why I refer to people that other people may refer to as able-bodied, as non-disabled. Because they lack disability. They have a whole element in their lives that they lack. And I have that element in my life. Because I wasn't born disabled, I also have grounds for comparison. I started my life as a non-disabled person, and I know my losses very sharply -- very painfully -- but I also know my gains." The resistance that the disabled encounter, Mairs ends her piece with, comes from the fact that people can't imagine losing their ability, don't believe it can or will happen to them and therefore have difficulty in relating to those with disabilities.
Language, our own and others', matters. And our perceptions shift as our language shifts. We take ownership of territories we would never have thought possible, likely, or desirable, and if we're doing well, we find a way to embrace it, to pull it into ourselves, make it our own, to breathe it in, to breathe it out, to come out the better for the experience. If we've really decided to swagger in this new reality, well, we help others to shift their perceptions, their reality, their language, to breathe with us.