An experiment:  Take a paper—whatever color you like; a pencil or crayon or multiple pencils or crayons and draw a picture of your body in any way you like—it can be realistic or an abstraction, concrete or metaphorical.  Think of this as an act of writing or a kind of handwriting.

A fact that interests me—in the caves of Lascaux when our early ancestors painted with such care and love--almost a physical somatic love, a hunger—the animals they hunted for food, they traced only fragmentary images of themselves.  It took a very long time to draw a complete human form—and even longer to develop what we call perspective or the “three-dimensional” figures of the Renaissance, which can almost, according to critic John Berger (“Ways of Seeing”) be seen a product of capitalism or only when you have possessions, money, goods, sales, to you have an emphasis on the appearance of “real” in art.

But to return to the caves, those fragmentary humans. What is it to see oneself?  Why it is hard to assemble a sense of that form as whole?  How is this seeing political—or about power?  How does the gaze construct the person?

I have a condition called X-Linked Hypophosphatemia or XLH; this is a mutation on the PHEX gene which means I’m missing an enzyme that allows the body to process phosphorus. The results are reduced height; thicker weaker bones; bowed legs—symptoms that mimic those of nutritional rickets.

From ages 4-8, I wore a body brace at night. The brace had a halo around it and screws that tightened at various points around the joints. My feet were encased in lace-up leather boots with a bar between them. I could not move within this contraption. The brace used certain techniques that were believed to lengthen the bone: weights on the boots, pulling on the leg, plates screwed tight against the joints.  The brace was also designed to straighten my legs. By the time I was eight, this effort to straighten appeared relatively successful but after only six months of not wearing the brace, my bones went back to their original form.  I remember the doctor looking at me and shaking his head.  “You’ve really messed things up this time, Missie,” he said. 

At twelve I underwent what is called a double osteotomy.  A wedge was taken from the knee and the angling of the major leg bones sort of flipped so as to correct my bowing and redistribute the weight that was stressing the joint. Eight pins were placed in each knee to hold my tibia and fibula into their new places.  I was in a body cast for six months. When I emerged my body was radically changed. I gained two inches in height. and my legs, which had previously bowed like “the hoop of a hula hoop” to quote one of my doctors, now approximated a more “natural” form.

What I remember being most shocked by was my deep mourning afterwards.  I had no real reason to feel this way or as far as I knew I didn’t, I but could not shake my sense of loss, nor the feeling that I had sold out a truer self in favor of a self who appeared more conventionally acceptable. The brute fact was, I was acceptable post-surgery to those around me in a way I had not been previously.  My parents’ friends rushed to congratulate me on how “well” I looked.  One of my classmates said, “Now you almost look normal.  No way you could pass before.”

I do not think even now I can really be said to pass, though it is interesting to consider what passing means in this context.  That my body no longer draws immediate stares?  That I am to the average gaze “prettier?”  “Passing,” which is, by definition, entirely about how one appears to the external gaze – the stranger, the person just walking by.  When people spoke to me post-surgery, they talked about how I looked so much better; very few commented on the change in function – the fact that presumably post-surgery I would be able to walk better.  

It is a truism that the disabled body is ipso facto one deemed in need of correction. Also, that we rarely question that need even when the processes of that correction are extreme, even baroque. For instance, in my case, the brace I wore for almost five years was uncomfortably like, if not almost identical in process and action to, the famous rack and screw of the torture chamber.  A few things I learned:

1.      Nature is obdurate—how many and truly Herculean efforts it took for the doctors to change my bones and even then they were always at risk of “backsliding.”

2.      The curative process was deeply gendered.  I never had a woman doctor.  Even today less than 10% of orthopedic surgeons are women, less than in any other medical speciality. 

Recently, I went through my old papers and came up with a list of things I remember my doctors (all male) saying to me:

 “You will look almost normal and people will appreciate your pretty face.”

“They will notice your blue eyes when your legs are straighter.”

“When you gain some height, some guy may say, hey, she’s not so bad-looking.”

“If a girl is not very pretty and not likely to marry, it’s sometimes good for her to consider

a career in biology.”

“Now you will walk straight on your wedding day.”

“Some men prefer women with wide hips because it means they can bear children.”

“Many girls who don’t get married become nuns. There is always good to do in the world.”

“It doesn’t matter what you are on the outside, it is the inside that counts.”

“Everyone looks the same in the dark. Remember that if you ever get desperate.”

 I remember the doctor who told me about studying biology.  He said in the lab a plain girl is often welcomed as one of the boys.  Later, when I was a grown-up and got my medical records, I found that he had written on meeting me for the first time he had written:

“Girl about nine years of age very quiet.  Pale, a little plump, very bowed legs R and :, Q angle of >3 of genu varum. Possible retardation (mental)? 

The process was gendered because they made it gendered—or the anxiety around the disability, my disability, or the shape of my body spilled out far beyond the merely mechanical. One might almost say they responded to me as if in desire.  Disability as a kind of taboo, a deviant and potentially dangerous condition that must be corrected but was perversely exciting—or at the very least compelling to have to cope with.  I have no doubt that the orthopedists, the surgeons who worked over my body so assiduously felt they were doing good; they were helping me be able to live a “more normal life.”

In her book, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature, Rosemarie Garland observes "[I]f the male gaze makes the normative female a sexual spectacle, then the stare sculpts the disabled subject into a grotesque spectacle" (1997, 26). 

What is sort of extraordinary—and I would argue fairly self-evident--is that women, roughly  50% of the percent of the population, are treated quite similarly to the disabled. Both are seen as somehow deviant embodiments needing to be fixed or controlled. One has only to think of all the normal things a woman might be expected to do to go work at, say, your average bank, to see this: Shaving legs, using foundation, plucking stray facial hairs, wearing high heels, a Spanx, avoiding certain foods, exercising, liposuction, cold cream, hair dye, mascara, hosiery. Such grooming represents a kind of erasure of the original female self, the untamed or unmediated female self.

The disabled body’s rebellion or deviance is generally seen as more extreme and so are the solutions: corrective shoes, bracing, surgical interventions.  

I gained two inches through my osteotomy, and pressure the doctors applied in the pinning of the bones certainly resulted in a visible straightening. During my extensive surgery and extended time in a body cast, they also used some techniques that were new to the West, developed by Russian orthopedist Gavril Ilzarov.  Here from Wikipedia is a brief description of Ilzarov’s method:

“Ilzarov discovered that by severing a bone without severing the periosteum around it, one could separate two halves of a bone slightly and fix them in place, and the bone would grow to fill the gap. These experiments led to the design of the Ilizarov apparatus, which holds a bone so severed in place, by virtue of a framework and pins through the bone, and separates halves of the bone by a tiny amount. By repeating this over time, at the rate of the bone's regrowth, it is possible to extend a bone by a desired amount.”

The Ilzarov fixator is—or was during my adolescence—a fairly commonly surgery for people with my condition.  These methods have extended bone height by as much as 12.8 centimeters through a process called “distraction osteogenesis.”  Yet this process is extremely laborious—and painful.  The bone is sliced microscopically and extended a tiny bit at a time over a considerable period, during which the person wears a halo with pins that protrude from the skin and bore inside and through the bone within.  

I like the name “distraction of the bone, suggesting a bone that is paying attention elsewhere or is being tricked or beguiled into correction.

When I think of loss, mourning, grief, I think of these kinds of somatic erasure. I hope you’re all drawing.  When I draw what I imagine of my body, I draw the pervious line of my bones: Wishbone-shaped, bowed, curved, radically torqued, seed-shaped, flower-shaped, bowed.

The vanishing is of the body, also often for disabled people, is of the entire category of body.

 For example, as far as my own XLX—a company in Japan recently introduced an enzyme replacement therapy that will probably eliminate any visible effects from XLH.  The drug replaces the missing enzyme, resulting in a true metabolic cure or close to a cure.  The cost of this treatment is over $200,000 a year, though for the introductory period, this cost is covered by the drug company.  There can be no doubt that such an outcome is desirable but as someone in the category of “XLH body,” a specific form, created by specific biological conditions, I cannot stop myself from feeling a certain perverse and elegiac sense of resistance.

When my third child was born at New Mexico University Hospital, I attended a remarkable series of conversations between a group of Achondroplastic dwarves  and the genetic researchers who made pre-natal testing for this form of dwarfism possible.  The discussion was framed as one in which the availability of the test would presumably eliminate or significantly reduce the incidence of this form of dwarfism. Slides were shared of communities of Little People.  Many had worked in circuses as jugglers, acrobat, clowns.  Others during World War II were hired to work on airplanes and bombs, a rare period when their service was actively solicited for their size made it possible for them to enter spaces that would be impossible for a “normal-sized” person. A certain subdued melancholy pervaded the discussion. A culture or way of seeing, a category of difference, a tribe, as it were, was being eliminated.

XLH occurs in 1 in 300,000 births. I have had only a handful of encounters with people who have XLH, most of these through an XLH affinity group. Most in the group would probably welcome the idea that in a generation only those without access to any treatment will show visual signs of having XLH.  I know when my children were born and diagnosed shortly after birth, there was a period in which I mourned that my children, like me, would not be “normal” in appearance.. Yet when I had the surgery at the age of twelve that so radically “fixed” my bones, I mourned that they had changed me.  I mourned this persistently.  

In some caves not far from Lascaux, bones were found that were believed at first to be the bones of prehistoric humans suffering nutritional rickets and later found to be prehistoric humans who had a mutation “probably on the PHEX gene,” the gene on which the XLH mutation occurs. This surprised me when I read it. I felt a flash of pride.  My mutation had survived a long time though it “appeared to offer no evolutionary benefit.”

I think sometimes of this and wonder why disability is seen as such a problem. Why is it not viewed as art is viewed where innovation or diversity is seen good, even necessary? Or as nature itself is viewed? One would never say “How bad this flower is for having a different color than all the others like it,” or “What is the matter with this bird on this island; it does not have gray feathers anymore.”

Perhaps our concern with physical difference is a marker or indicator of the ways in which as humans we feel ourselves distinct or even estranged from nature.  I don’t want to fall into the error of imagining a nature that is unrealistically benign. Or of ignoring the ways in which control of nature is so central to our experience as modern human beings that we are often naïve in conceiving of nature even as we praise it. Yet the particular habits and difficulties that rise from what might call a “patriarchal effort” to control nature deserve consideration. In particular, how this control seems to move beyond reason into a reliance on metaphor, faith, superstition, or simply a will to power.

Rosemarie Garland Thompson speaks about how the construction of the male gaze when turned on women and people with disabilities acts to preserve the social hierarchy or as Kim Q. Hall writes in “Feminism, Disability, and Embodiment,” (NWSA Journal, Fall 2002): “Garland-Thomson articulates how both femaleness and disability have been marked as deviations from "normal human" embodiment, deviations that must be contained or eliminated to maintain the perception of existing social hierarchies as natural and inevitable.”

As a young child, strapped into my brace at night, I had a repeated vision of myself as watched over by an Iron Man.  More accurately, I came to think of my brace as a kind of iron man—I suppose because the brace hurt, and it became easy to envision this pain as a kind of being.  I felt a shock of familiarity when in college, I read for the first time Emily Bronte’s Iron Man poems:

That iron man was born like me 
And he was once an ardent boy 
He must have felt in infancy 
The glory of a summer sky 

(16 Lines, Emily Bronte, The Ashley, Ms, October 1837) 

The poems arise out of the imaginary world of Gondol, which Emily invented with her sister Anne.  Sometimes described as science fiction or even fan fiction (at the very least Gondol presents as a kind of fever dream of 19th century expansionism and colonialism), Gondol and the Iron Man himself seem to express or rather explore the tensions between modernity and the more ancient cycles of the natural world.  

Charlotte Bronte’s first biographer, the novelist Elizabeth Gaskill, notes that the Yorkshire of the Brontes was at the cutting edge of the great industrialization happening across England but also only a generation removed from a very different way of life. The Bronte’s nurse Tabitha was said to have shown Emily and her sister the fairy circles, where she claimed the little folk danced until the mills were built and they ran away. Nature in Emily Bronte’s poems is a violent often terrible thing; yet the horror of the Iron Man is that he has lost all connection with the natural world – he is a force, a worker, a machine, a process-- he grinds through what is around him, he cannot be touched or stopped.

We see a similar argument in some of poems of Sylvia Plath’s Ariel. Viz: the difference between the furious voice of the Elm:

I know the bottom, she says. I know it with my great tap root:   

It is what you fear.

I do not fear it: I have been there.

And the distorted, flat, “horror” “pain” “machinery” of poems like “The Munich Mannequins”:

Naked and bald in their furs,
Orange lollies on silver sticks,

Intolerable, without mind.

Plath, like Bronte, often writes of the danger of the denatured, the violent rupture, the death-like horror of atomization.  Indeed, the whole of her confessional is partly an eruption in response to this perceived threat of control, commodification of a self, a deadly vacuousness—the machine on the other side of nature.  

Of course it would be a mistake to see nature as entirely not  “machine-like.” But I also can’t help finding in the processes of my own straightening, normalizing, evidence of a social construction of body as gadget or utensil: a notion of  body as a unit of production,  mainly to be assessed in terms of its productivity rather than experientially or holistically.

This view of body as merely productive has had terrible consequences for women, for people with disabilities, and, I would argue, for the lives of people in general. Yet it is so hard for us to truly think outside capitalistic notions of production or determinations of value.  I find even among fairly liberal people, it is easy to shock by saying something like “I was happy my children were born with my disability.  I wanted them to have that experience.’  This seems to most unreasonable, but why might it not be simply true?  Isn’t such affirmation a part of living in a body?   One disabled blogger I stumbled across, Amy R.—I wish I knew her last name:  said this:

“Disabled people don’t always mourn their bodies or need saving the way nondisabled people sometimes assume they do.

One of the hardest things for many nondisabled people to accept is that disabled people intimately inhabit their own bodies. They–I want very badly to say “we”–learn, sometimes instinctively, how to make the laws of physics work for their bodies as best they can. They interact and react constantly to environments and people that may pose physical or spiritual difficulty. They are immersed.”

It is the word “immersed” that I love most here – some glimmer of a vision of body as climate or eco-system.

It is curiously moving to view the struggles early humans had in drawing their own bodies; compared with the fabulous assurance of their tracings of horses, bison, mammoths, ibex, aurochs, deer, lions, bears, and wolves. The few lines that trace the human form are halting, amateurish, and most of all fragmentary – a outline of a hand here, the curve of a shoulder blade there – as if they saw the body not at all; they saw themselves merely as windows looking out at the world.

I cannot remember a time when I was not conscious of myself as not beautiful –as, say it, ugly--or was not aware that there were unspoken rules or principles that governed the decision of whose body was acceptable and whose was not.  Rosemary Garland Thompson writes: “extraordinary bodies make waves, because they don't conform to standards or expectations, they require us to explain them. If we don't, then they scare the living daylights out of us…” which goes a long way toward illuminating the—at least for me—mysterious hostility I so often encountered as a child with crooked legs. Yet, really I was only a body, a beathing, and in this, I feel myself sliding backward, to those early humans in the cave, who appeared flummoxed, wondering – what am I, where do I begin, where do I end, why?

I hope you are still drawing – maybe only a few scattered lines, maybe a circle or two, maybe marks that fail to entirely capture whatever it is you wish to convey about your particular body as it exists.  What if we were all to paste up these pictures as if on the wall of an imaginary cave?  Would they form a single picture?  Could we share them with each other and talk about what we’ve drawn or the different ways we might conceive of ourselves as bodies in the world?