Language and the Shift of One's Perception Over Time

(Written as part of the internal work of a lecture I will give tonight)

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:

"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.
 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."

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.


Roger Kulp said...

I am deeply grateful for you for posting this link.I had never read this essay before.It really sums up my position a lot better than I could.

"Oh well, at least you're not going to die." Are there worse things than dying?I think that there may be.

Amen sister,amen.

But I don't care what you call me,so long as it isn't"differently abled",which strikes me as pure verbal garbage designed,by its ability to describe anyone,to describe no one.

That pretty much says it all, doesn't it?I think the same can be said of describing autism as a "neurological difference" .

Lest I begin to sound like Pollyanna,however,let me say that I don't like having MS.I hate it.My life holds realities--harsh ones,some of them--that no right-minded human being ought to accept without grumbling. ...All the same, if a cure were found,would I take it?In a minute.

Acceptance is not the same as a desire to be rid of your condition.This woman seems to accept her condition,and has found positive aspects of it,but would still like to be rid of it.A belief I share.There are those in both the neurodiversity and antivaccine movements,who could learn a lot from this woman.

Doctors too think of themselves as healers,and for this reason many have trouble dealing with MS patients,whose disease in its intransigence defeats their aims and mocks their skills...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.

Which sort of explains why,with all of my weird genetic,and metabolic problems,it took me so many years to get any real testing that might lead to a diagnosis. They are testing my mother,she has a lot of the nonautistic, nondevelopmental medical issues I have.She also has some of the same folate and porphyrin issues,as well as a history of metabolic infarctions.MTHFR?I think doctors are intimidated by a condition like mine,and if it also happens to have "features of autism",as mine does,it's all that much easier to write off mysterious symptoms as psychosomatic.

Again thank you.I'll come back tomorrow,to see what you have to say to this.

KWombles said...

I'm glad it was helpful to you, Roger.

At this point, Roger, there is enough scanning to suggest that there are neurological differences. Differences may be caused by an underlying pathology, but they may not.

For example, there is a definite difference in my pancreas's functioning that in a non-diabetic person's pancreas. See, there's no stigma attached. No one going my pancreas is evil because it doesn't work as well as others, or my cells for not being able to take in insulin; they're definitely different from other people's cells that don't have insulin resistance.

Difference connotes exactly that, not a dismissal of the difficulties a person may face, but the reality that things are different.

I believe you took her differently- abled in reference to autism too far. Difference = not the same.

Where neurological difference is used to downplay the struggles, there's a problem, but the only people skewing that to mean that are those who (for whatever reason) have their panties in a wad over folks who are advocating for acceptance, appreciation, and accommodation. It's a strawman argument and doesn't hold up to scrutiny.