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Monday, January 6, 2014

On Normal: The Concept is Inherently Destructive

I came across a wonderful blog this morning that has sparked my imagination and infused me with the hope there are others like me that understand our health care system badly fails all those with atypical bodies. The blog is written by Heather Kirn Lanier author of Teaching in the Terrordome and The Story You Will Tell Yourself. Lanier's blog is a must read from my perspective. Link: Her post "Breaking up with Doctor Normal" resonated with me because every time I meet a physician my first thought is not about my health care but will the person acknowledge my humanity. Will said physician look at me as though I have a failed body. Like Lanier, I have heard variations of the following: "well in a normal situation..." Physicians are oblivious, not all of course, but many if not most. Physicians have stated some remarkably stupid things to me. Here is a random sampling.

"Do you get out much?"

"I wish my other patients had your drive. It would make my job easier".

Upon learning I have a PhD: "I did not know that was possible for a person in your condition".

"You are an amazing man to be so active. I could not do it".

When I had shoulder pain: "So your arms function as your legs. Pain is part of disability. You know that".

"What's it like to be paralyzed. It must be deeply depressing".

The comment "in a normal situation" is ever present when accessing health care.  I have heard this line and variations of it dozens if not hundreds of times.  I  consider this phrase inherently destructive.  I am set up to fail every time the word normal enters the equation. Lanier's daughter Fiona will fail as well. Lanier as a mother will fail. Lanier's eloquently observed when meeting with Doctor Normal:

 after some talk about what Fiona cannot do (always, always their emphasis on her cannots), Doc Normal said, “I mean, she is way, way behind.” That is when I realized that the doc’s use of “normal” wasn’t just a difference in our vocabulary usage. It reflected a different way of seeing. Way, way behind, he said. I saw a race. Numbers on the backs and fronts of runners, all children. The able-bodied kids charging ahead, the whites of their brains all fatty and luxurious with myelin, sending and receiving impulses with standard issue speed. I saw them racing toward a finish line. I saw a ribbon fall when their chests touched it, and I saw arms raised in victory.
In the metaphor, my daughter is way, way behind. In the metaphor, my daughter is a turtle creeping along the asphalt, and no, there is no fabled “Tortoise and Hare” ending.The metaphor makes a competition of human development, one in which my daughter is ultimately dismissed because, let’s face it, in this competition, she will never “catch up.” At a certain point, a marathon’s course shuts down. The tax dollars no longer keep it open. Traffic resumes. Night descends. The sky becomes black. The spectators and their applause go home.There is no winning when this kind of language is applied to my daughter or anyone like her. The language highlights a way of thinking about the human body that measures the body by its output.
A person with an atypical body cannot measure up to "normal". I can never be normal. Fiona will never be normal. The concept of normality within the health care system is a pervasive problem that has an adverse impact on all those with an atypical body. One could take a pessimistic approach as my good friend Stephen Kuusisto has done. Link: Kuusisto is correct in that Lanier encountered one of many, a mob in fact, of poorly educated narrow minded physicians that lack a modicum of knowledge beyond the hard sciences. Socially inept is a phrase that comes to mind. But it runs much deeper than than a lack of knowledge, social skills, an awareness of disability and how people can and do adapt. Disability, life long disability, is very bad. Disability is a fate worse then death. We are failures at multiple levels: we are an economic drain, we represent extra labor, we require expensive medical technology, we are the symbolic representation of the myriad of ways the human body can go wrong, and last but not least, we are a failure symbolically. Modern medical science is limited in what it can do and we are a reminder of that fact. Our identity as a result is spoiled as Erving Goffman noted almost 40 years ago.

We people with atypical bodies have no place in the world.  We are a class apart. What drives me mad is how do you undermine this? If we confront Doctor Normal does he have the social skills and time to get a nuanced point? Here I share Kuusisto's pessimism. Clinicians with a waiting room of people do not have the time or inclination to enter into such a discussion.  Perhaps I am being too negative but I think not. I think a perverse form of pragmatism is being performed that illustrates the flaws associated with capitalism. The physician is providing a service. I am a customer accessing his or her services. We each have an agenda and goal. As I read Lanier over my tea, I imagined the following scenario. I am in a small cramped exam room. Enter Doctor Normal. A cursory physical exam is performed, tests resulted looked at, and I hear the familiar phrase "in a normal situation".

Me: Doc your comment on normal makes me think of Marx and Engels. Class is a prominent feature of capitalist society. In German Ideology Marx and Engels observed class is itself  a product of the bourgeoise. In contrasting my body to normal I am set up to fail as a lower class of people. You are denying my very humanity. Surely you get the point?

Doc: Silence and a curious look of utter confusion.

Me: Come on Doc. Think about it. I am part of the exploited proletariate. Marx wrote "In so far as millions of families live under economic conditions of existence that separate their mode of life, their interests, and their culture from those of the other classes, and put then in hostile opposition to the latter they form a class." Get it? I am a class apart from normal. You represent the bourgeoise. I represent the proletariate. I am exploited by the capitalistic system while you reap the rewards of a privileged economic and social position.  We are a class apart.

Doc: Well that is an interesting observation. Now as I was saying "in a normal situation"...

Me: Bang head against table in frustration.

Doc: Doctor normal is upset and states "Oh no self injurious behavior. We need a psychiatric consult ASAP."

Silliness aside put yourself in my situation or better yet Lanier's situation. Doctor Normal has no appreciation for the logistics involved. Lanier noted her daughter sees nine different doctors, five therapists, and a nutritionist. In addition to being a mother Lanier is a complex care giver responsible for merging the ideas and suggestions of a large group of medical professionals most of who do not speak to one another. By itself this is a full time job.  What she does not need, what all people with an atypical body do not need, is to be compared to normal. Fuck normal. Think Young Frankenstein instead--Abby Normal.


Amy said...

This post really speaks to me - I've fired my share of Dr. Normals since my daughter was born 11 years ago.

One pediatrician didn't even want to examine her - "She's fine, this is normal for kids with Down syndrome."

She had pneumonia. And Dr. Normal had no clue why I was so pissed at him, or why he was fired.

william Peace said...

Amy. Last year I read 20% of all physicians refuse to see and follow the care of people with a disability. I wish this surprised me but it did not

heatherkirnlanier said...
This comment has been removed by the author.
william Peace said...

Heather, In the olden days when I went through the medical mill (1968-1978) physicians were curious. That is they wanted see people, children, who had unusual conditions. I fit that description and sometimes felt like a rock star so many wanted to see and examine me. I loved the attention. Fast forward to today, no one has time for complex patients.These people, and yes kids, take up too much time. They are a risk too. They do not fit standard protocols. A law suit must be avoided or even the potential of such a problem. What you are essentially is a parent and patient manger. Akin to a building manager who handles many workers in the trades to keep a building going. Of course the obvious difference is you and Fiona are human begs. But I myself question that when on hold for hours at time.

Lynn said...

Look no further than the process of medical education and indoctrination. That's not to say that docs *cannot* emerge from this social-Darwinian and relentlessly "norm"-oriented process with humane and non-competitive values; but if they do, it's no thanks to the way we educate and habituate them. Not to mention that folks who even get into med school are, by definition, winners of an unforgiving achievement race - one that makes no pretense of accommodating people with functional differences that would not otherwise prevent them from being wonderful physicians.

It's kind of like the way we make the only viable path to public office one of ruthlessness and back-room deals, and then suffer collective disillusionment when our political leaders turn out to be ruthless and corrupt.

Not saying I know how to solve either problem - and also not saying that we shouldn't persist in holding those in positions of power to a higher standard - just saying there's an unfortunate "reaping what we sow" factor here.