Monday, January 16, 2006

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} [delta-giacu-fsigma], or twice, from duo, {delta}{guacu}{omicron} [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.

Dis
ease 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:

5 comments:

Bonnie Ventura said...

Hi again. I didn't think you were intentionally "dissing" anyone, and I'm certainly not the P.C. police, so please don't feel that you have to apologize for your choice of words.

I find it very interesting that difference and dis both come from the same root word, that they are both negations of belonging, ways of describing The Other. It's a rather sobering thought that, for thousands of years, our language has reflected the view that those who are "diseased" are different from the majority, without ease in the world, separate, lacking, inadequate, and in need of a cure. And yet the word is tossed around so casually by modern medical science.

And of course you're right that, as parents, whenever we see that our children are in distress, we naturally look for ways to make their lives easier. I believe that's true of all behavioral issues, not just those that have been categorized in psychological terms. No matter what a child's neurological type may be, parents always have the difficult task of deciding how to respond to behavioral concerns. When do we discipline? When do we talk? When do we just stand back and let the child deal with his/her own problems? When is professional counseling helpful? When is medication appropriate? What other alternatives are there?

I once considered medicating my son for obsessive behavior. This was shortly after I started my job, and although I work at home, there was enough disruption to his routine to make him feel anxious. One of his teachers talked about germs and hand-washing, and he got that thought stuck in his head and started washing his hands obsessively. His hands got so red and rough that I was worried he might scar himself permanently. The teachers started making comments about "special needs" and asking what I thought about medication. (This was before I knew anything about Asperger's.)

I tried buying a natural product from the health food store that was supposed to help children feel calmer. I thought that if it didn't help, at least it was "natural" and wouldn't do any harm. Wrong! The poor kid cried all day after I gave him a dose of the stuff. I felt awful about it, and I thought that if he could have such a bad reaction to a mild natural product, what would pharmaceutical drugs do to him? I decided not to take the risk.

Instead, I took my son for a few sessions with a hypnotherapist. That helped to calm him somewhat, and I also bought a much milder hand soap and gave my son canned salmon two or three times a week (some people say that fish oil helps to reduce obsessive behavior, and I don't know if that's true, but it noticeably improved the condition of his skin). I also noticed that he was washing his hands in overly hot water, apparently because he doesn't have much sensitivity to pain and didn't notice that it was hot, and I reminded him that it was important to check the position of the faucet knob to make sure the water was at the proper temperature. After a few months, his hands were looking much better.

I took a completely different approach, though, when my daughter had an incident similar to M's carafe tantrum. My daughter is not autistic, but she was obsessive and tantrum-prone when she was younger. When she was six years old, she had just finished running her bath water (and was feeling very proud of getting ready to take her first bath all by herself) when her brother went into the bathroom, locked her out, and told her that he was going to take his bath first. She went totally ballistic and lay down in the hall outside the bathroom, screaming and kicking the door. There was a mirror attached to the inside of the bathroom door, and it fell off and shattered all over the floor. Fortunately, her brother was already in the tub and wasn't injured.

I decided to respond with draconian discipline in order to impress upon her how important it was to control her temper. I grounded her for three months. This happened in the spring, when all the neighborhood kids were getting new bicycles and going out to play. My daughter kept asking if she could go out, day after day, and I told her, "No, you're still in trouble for breaking the mirror." Then she would promise to be good, and I told her it would take more time to convince me that she had learned how to behave better.

Her temper was much improved once she finally got ungrounded!

(I'm not suggesting that you should have punished M. for breaking the carafe. No doubt M. was already feeling miserable enough after getting hot coffee and broken glass all over her feet.)

As parents, we have so many decisions to make, and often we just have to trust our intuition in deciding what course of action is best.

I just read a very good post on another blog about parental intuition. I'll put a stand-alone link at the end because the links in my last comment got so messed up! (Maybe there was a glitch in an anti-spam program?)

Intuition Precedes Science

Estee Klar-Wolfond said...

Thanks for the insight. This is an issue we are all trying to navigate.

Thanks also for directing me to your blog. I will keep reading!

Estee at http://joyofautism.blogspot.com

Anonymous said...

Liz here from I Speak of Dreams. This is an only tangentially-related comment:

At President's Council on Bioethics, Dr. Fernette Eide and Dr. Brock Eide will be speaking on how they think the health professions, the educational system, and our current culture (including the culture of parenting) are meeting children's needs. The general question they are discussing is, how well is society meeting it's moral obligations to children?

I invite you to share your thoughts with the Eides, by commenting on their blog at this link,
Neurolearning
or by emailing them at

drseide@neurolearning.com

Bonnie Ventura said...

Just to clarify, the blog I linked to, with the post about intuition, is not mine. I don't have a blog (although I do enjoy reading others' blogs).

I have a website and forum where I collect links and personal stories related to autism, Aspergian Pride, and a fanfiction site, Ventura33.

Bonnie Ventura said...

Sorry about cluttering up this page with so many comments, but I feel as if I haven't expressed myself clearly, and like M., when I feel that I have made an error in social communication, I want to go back and fix it. (Fortunately the Internet is more forgiving than real-time conversations.)

What bothered me about the indigo children post was not just the word "illness" but also the implication that all children who have obsessive thoughts and throw things on the floor are seriously abnormal and in need of treatment. In discussing my own experiences, I wasn't trying to criticize or second-guess anyone else's decisions, but rather to offer another perspective and to point out that every situation is different and that some children may have similar behaviors but not be in distress.

My kids threw so much stuff on the floor when they were younger, I'd be sitting here for a very long time if I tried to list it all, but they weren't emotionally distressed in the least. (In fact, my son thought it was great fun to throw and break things.)

One can't generalize... that's the main point I was trying to make.