On Ease and Disease

A riot is the language of the unheard.
—Martin Luther King, Jr.

Our kids' meltdowns are the mini-riots of the unheard. And today, in honor of Martin Luther King Day, seems a fine time to reflect on disease and discrimination.

Fortunately for me Bonnie Ventura has written a thought-provoking response to part of my post on the question of indigo children. Her comment is so very important that I want to answer in a full post, rather than in the comments area.


Bonnie responded to my question—"Could anyone doubt that this sort of obsessive thinking is a form of illness?"—

This issue was discussed in a recent thread on called "The Social Burp" (it's in the members-only general area, so you'll need to log in to read it). To sum up, many autistics feel momentarily distressed when experiencing flashbacks of unpleasant social incidents. Most of us learn to shrug it off, reminding ourselves that it's in the past and doesn't matter. A minority suffer from severe distress that can trigger self-injury, and medication and counseling can be helpful.

I don't know which group M. falls into, and again, I wouldn't presume to criticize your decision. As parents, we all make the best decisions we can make with what information is available. I am leery of drugs because the pharmaceutical companies don't give out enough information (as you mentioned in your post about liquid Paxil) and they haven't done long-term safety studies with children.

(As for neuroleptics being "psychiatric shackles," they are in fact commonly described in institutional jargon as "chemical restraints." Not to say that they are always used as such, but it does happen sometimes. More information on that can be found at the website.)

We live in primitive times. I expect that in 30 years or so, doctors will routinely sequence each baby's genome and will be able to prescribe individually compounded medications that can prevent many problems before they occur, with no side effects, instead of today's hit-or-miss prescribing.

I take Bonnie's point very seriously and appreciate the gentleness with which approaches the question of how individual parents care for their autie children.

I had, in fact, paused over that line when I was re-reading my post before uploading it. Originally I had written: "Could anyone doubt that this sort of obsessive thinking is a form of mental illness?" I scratched the "mental" because of the curious way that our culture, steeped in a heritage of mind-body dualism, still imagines that mental illness is somehow not physical. But I kept the language of illness, without any qualification of my understanding that the idea of illness is a social construction.

Keeping the word "illness" was, perhaps, ill-advised, especially as I am, in the main, more closely aligned in my thinking with the idea that autism is a neurological difference rather than a disability or a disease (as you probably saw from my Four D's post). When offering a critique of the New Age discourse of indigo children, I slipped back into the language of disease.

From the position of a parent I find that I am occasionally drawn to think of M's disposition as dis-ease: that is, as a lack of ease in the world, as well as something to be treated, though not necessarily "cured."

Words that begin with the Latin prefix of "dis" hail from the Greek, orig. *dvis = Gr. [delta-giacu-fsigma], or twice, from duo, [delta-guacu-omicron] two, the primary meaning being ‘two-ways, in twain’. Dis has to do with making the world into opposites, as in distinction or discrimination or division. (This, according to the Oxford English Dictionary, which sadly requires a subscription for access . . . but here is a little screen shot of what it reveals.)

In its etymological roots, then, dis-ease is not just a lack of ease, but actually the opposite or negation of ease.

So our language of dis-ability, dis-ease, dis-tress, and dis-may comes from a binary way of thinking. The dif of difference, and difficulty, is a later Latinized version of dis. These words are based on dyadic, binary divisions: on separating one thing from another. And, in the process, they often separate each of us from one another.

The word "illness" was probably particularly ill-chosen because is does not address the question of ease, but rather the question of good and bad . . . as in an "ill-wind," the "ill-begotten," and so on. Ill-begotten is a particularly nightmarish direction, as sites on neurodiversity and eugenics suggest. So my deep apologies.

Disease is somewhat more robust a term because it holds within it the question of ease in the world. The discourse of disease is a notoriously difficult one. While it allows us access to medical care that can make our lives in this difficult world somewhat easier, the price-tag of thinking of ourselves, or our loved ones, or each other, as diseased or disabled can be a very high one. Even the language of "differently abled," which comes to us from disability rights activism and disability studies, carries with it the slight dis of different.

An example: I'm reading an incredible book by Joshua Wolf Shenk called Lincoln's Melancholy. (Full disclosure: Josh is a colleague and friend whose work I am delighted to endorse, not that he needs any additional endorsements.)

Josh demonstrates how the character that fueled Lincoln's greatness—that gave Lincoln the gravitas to lead the country through one of its darkest hours—would, today, disqualify him from election. Cast as mentally ill, depressed and unstable, rather than as a somber and serious man of deep thinking, Lincoln would never make it through the press queries of a contemporary presidential primary.

We are all paying a huge price—costs we can't even begin to fathom, let alone calculate—for the increasing prevalence of the medical model of viewing the world.

In parenting Sweet M. I have tried to take my cues from her to the greatest extent possible. We sought psychiatric help for her preoccupations (aka OCD symptoms) only after she sat on the couch telling me that she hated herself because she could not stop thinking about the black phone. And only after a carafe of hot coffee and broken glass swirled around her feet.

My response was to her dis-ease, which inevitably, given our contemporary culture, catapults us into the discourse of disease and illness, remedies and cures, treatments and regimens.

In my life, and in my work, and in this blog, I am writing about how our family has navigated the complicated discourses and practices—medical, educational, and legal—that intersect in our lives. I haven't—yet—found a way of writing about my Sweet M's dazzling life that doesn't draw on the discourses that shape us, and that we, in turn, hope to shape.

One of the exhilarating aspects of the autism rights movement is the new language that has begun to move through the culture at large: neurodiversity, neurotypical. The emergence, and adoption of new language, often signals the power and impact of a new social movement.

So on this day, on MLK Day, I wanted to reflect on how we might move from discrimination to discernment, from judgment to regard, from what divides us to what connects us. And to the knowledge that even in the midst of our differences no dis was intended.


Keywords: autism • childrearing • parenting • psychiatry• Abraham Lincoln • depression