This Article Is Not about Disability

This morning’s Denver Post runs the following headline: Lakewood cop helps boy get wheelchair.

When the owners of the [stolen] car, Joel Hidalgo, 31, and his wife, Esmeralda Torres, 29, arrived, Fairbanks greeted them and noticed they had left their young son in the car.

"The mother started crying that the wheelchair had been stolen from the car," Fairbanks recalled. "While she was crying, I looked over at the little boy and it just hit me that he was just the sweetest little kid."

Lt. Fairbanks went out of his way to find someone (Peter Kopp, Kids' Mobility Network) to donate a wheelchair to the family, helping the son to have greater access and mobility again. Fairbanks is a hero, but not exactly for the reasons the article implies.

While Mike McPhee, the author, uses pathos (or emotional appeal, for the non-rhetorically minded) to capture the reader (in the second sentence we learn that Jesus Hidalgo has cerebral palsy; he is described, on sight, as being “the sweetest little kid), the real ugliness of the situation is not that a young wheelchair-user had his wheelchair stolen, but that the cost of a wheelchair is a barrier to many who would otherwise use them to navigate our built environment.

Thus, this story is not exactly about disability, but about the market. Lt. Fairbanks knew the right thing to do was to restore Jesus’ independence and autonomy, so he found someone who would buck the market and give away a wheelchair. Although Jesus is only seven, his situation suggests some realities for the community of people with disabilities.

In 2000, the unemployment rate for adults with disabilities who wanted to work was 9.5 percent (the same rate across the U.S. in July 2009, the very same apoplexy-inducing number) compared to 3.4% for the entire U.S. population, and over 30% of those who did work did so at or below the poverty line¹. Now, combine those numbers with the fact that in order to receive any federal benefits, a person with a disability must be unemployed, and you begin to see how the employment gap further disables the disability community.  What do I mean? If a particular wheelchair costs $5,000, and you (an adult PWD (person with a disability)) work yet live at the poverty line, which for a single-person household is (buckle up) $10,400, and your job prevents you from collecting benefits under current federal regulations, you can see spending 50% of your annual income on the device that helps you go from the car or bus to the front door of your place of employment just does not seem tenable.

Ultimately, McPhee builds this story around the concept of charity (which strikes me as a wicked phonetic pun), too long the position dominant culture takes toward people with impairments, and suggests that the lesson to be learned is that we should be charitable to those less fortunate, when in fact we should be trying to insure access, access to spaces and to the tools that enable mobility. In fact, this story is about socio-economic status.

Truly, the Denver Post has told a good story for many reasons—too often we only hear about the bad cops; too often we do not hear about the life experiences of people with disabilities—but when we read these kinds of stories, so often laden with uni-focal pathos, we might read them as instances of overdetermination, situations or identities that are not reducible to one term (disability) but are articulations of many causes that together give rise to the situation presented before us.

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¹Work in America: M-Z. Carl E. Van Horn, Herbert A. Schaffner.

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Ballad of the Amputee: The Song Remains the Same

You might know this photograph. The object of this photograph is what Mike Simpson calls, “The Lobster Box,” meaning a shoebox that holds two prosthetic arms. The Arm on Top connects to the Terminal Device in Middle; the Cosmetic Hand below can also attach to the Arm on Top; and the Arm at Bottom is fully-assembled, the first prosthetic I had when I was an infant. If you do know this photograph, you probably know it from The Dismodern Bodcast (which is, coincidentally, up and running again after a late-spring hiatus).

The Lobster Box holds my earliest and most recent prosthetic limbs—the Arm on Top dates to sixth grade, approximately 1985, and I think I wore it about four times. I never wanted to use a prosthetic limb, and I felt that they got in the way.

Flash-forward: July 10, 2009, to Hanger Prosthetics and Orthotics, 38th Avenue, Denver, Colorado.

I am sitting in a strip-mall storefront, a prosthetics and orthotics office with an adjoining shop for orthopedic footwear. (It is incidental that the man being fitted for new shoes tells his wife and the fitter that if he has more trouble with “that toe” he will “cut it right off,” although through the power of retrospection, it creates an odd foreshadowing. let’s just say it isn’t incidental, and let’s agree that it is foreshadowing.)

Hanger is a nationwide company that creates many types of prosthetic devices, and it is the company that famously provided the base limb for Aron Ralston’s “bag of tricks.” In the past year, I’ve met Ralston, read his book, wrote about him¹, and in general had him rub off on me a little bit, specifically his stories about paddling and mountain biking. Using a special terminal device designed by TRS, people with upper-extremity amputations can hold onto a kayak paddle, something I now cannot do but sincerely wish I could.

So, at the age of 35, I made this appointment with Barry (not his real name), the prosthetic fitter.

An evaluation for a prosthetic is mind-bending for the person with the amputation. In daily life, people stare at you, and their looking is rude, no matter their intentions, upbringing, etc. In the evaluation room, though, Barry stares, judges, photographs, measures, feels, and determines, all while you sit there fighting your basic human feelings about being measured in such a way. You are objectified, fragmented, atomized—you become estranged from a body you know better than anyone else.

If you know me, you know my left arm (which has a just-below-elbow congenital amputation) also has a hand. Five fingers, a palm. The hand is small, has no bones, and I cannot use it to grip anything. What it does have: Nerves, which I suspect are more highly-concentrated there than almost anywhere else on my body. Although it does not look like a normative hand or have normative functions, it is my hand.

As you can imagine, a prosthetic arm is a value-added product of an industrial process. Meaning, to make the highest return on the sale, the prosthetic manufacturer standardizes many of the parts that go into the artificial limb. According to Barry, amputations that result from medical operations tend toward a uniformity—there are standard shapes and positions on the limb that the surgeon attempts to meet. Thus, while creating the abject, the abject is normed.

However, my left hand (which I called “my little hand” growing up) is not typical of either a medical or congenital amputation, nor is it similar to the bodily differences attributed to phocomelia or thalidomide. Contrary to Tyler Durden’s opinion, I am a unique snowflake.

Within the first five minutes of the evaluation, Barry had taken my left hand into his fingertips and asked, “Have you ever thought of removing this?”

For the third time in my life, I’d been asked that question (or, more accurately, that question had been asked of me). At birth (btw, the physical condition of my left arm was a surprise to everyone at that moment), the doctors advised my mother to have my left hand removed. When she asked why, they could not provide her a practical, medically-sound answer other than convention. She declined, forcefully.

When I was being fitted for Arm on Top, the prosthetic maker (at Hershey Medical Center) asked the question near me, but directed it mainly to my mother. Other than that question, the prosthetic maker was exceptionally kind an considerate.

Now, an adult, I was being asked this question seriously. Here is a snapshot of my internal responses:

• Anger: I had a hard time believing that a professional prosthetic maker did not have more tact (to ask a question based upon function or design, etc.) or awareness than to ask this.
• Fear: With that question, all the weight of ableist ideology settled on my shoulders—medical discourse wanted me to be a different extraordinary body, and I wondered how many people kind of shrugged when asked that question and later, post-op, wished they had not trusted the experts so fully.
• Sickness: My limb is just material to an industry. I am just matter. (Truthfully, I thought of Yossarian in Catch-22: “Man was matter, that was Snowden's secret. Drop him out a window and he'll fall. Set fire to him and he'll burn. Bury him and he'll rot, like other kinds of garbage. That was Snowden's secret. Ripeness was all.” Yossarian realizes his body is just material and materiel for the war effort; what is my body, in this industry, material for?)
• Confusion: I am “healthy.” In our culture, “healthy” people are considered sick or ill if they have apotemnophilia, yet Barry, as a mouthpiece for the prosthetics industry, seems to suggest that the desire to electively amputate is normal or healthy for someone who is already stigmatized.

I had so many acerbic almost-said’s on my lips that I cannot believe I did not utter one of them, but instead said, “Why?”

When he explained the obvious (the sockets of prosthetic arms do not come with room for a hand like mine), I said “in the past, I’ve had prosthetic arms like the one I’m interested in now, and I still have this hand. The socket needs to be bored out with a drill.”

Then Barry told me I should meet with the “specialist” (I thought Barry was a specialist) who comes up from Arizona once a week. So now I’m on the books for an appointment with the same person who helped Ralston design his prostheses, and I am feeling marginally better about things.  Still, after 30 years of strident disability-rights efforts, those trained to work with people with disabilities still use dehumanizing language without a second thought—coincidentally, a student who will be beginning the prosthetics program at Eastern Michigan University in Ypsilanti this fall was shadowing Barry, and I plan to keep in touch with him to see what, if any, training about interacting in mixed contacts the students receive. From my spot in Ann Arbor, maybe I can help out somehow.

Insurance and cost, however, is the subject of another post. And on this process, I’ll keep you posted.

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¹No matter how deranged my senses at a given point, I would never write the headline “Amputee Aron Ralston Lives to the Fullest after Self-Amputation.” It is offensive on several levels—first, it foregrounds his physicality, not his humanity; second, it is conventionally triumphal. The original was “Catching up with Aron Ralston,” which (while sounding like a Depeche Mode greatest hits) suggests that Ralston, the human, is on the move (you can see it in the full URL).  Apparently, sometime recently, the editors have decided to rename the article.  Awful.

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The Dismodern Bodcast examines contemporary issues of the body, including normalcy and difference. The Dismodern Bodcast examines representations of bodily difference in order to understand how dominant culture uses rhetoric about the body for ideological and political purposes. This methodology disrupts what is often static, essentialist thinking about the human body in order to generate new ways of conceptualizing the body that are perhaps more inclusive and democratic.

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