I miss my Utopia

When I left Bluffton College to go to the scary world of academia I thought I knew what I was doing. Nod your head, my readers. We felt confident in our abilities until about August. When grad school approached, we suddenly realized we were not in utopia anymore.
I wasn't worried academically; my brain is the only part of me that really is dependable (well, as far as literature and rhetoric goes), and the classes seemed to be repeats of things I'd already done at BC. In fact, that first semester they were repeats, but repeats intensified. I didn't even realize I was running myself into the ground until Dad called to tell me Aunt Karen died in December. That was when I started to feel tired.
All I know is that I didn't feel disabled until I went to Boston. I never would have called myself "disabled" or thought about going to disability services for help; the FMS, CFS and arthritis were my little problem, and problems (a la Mom) have multiple solutions which we must weigh for their life-affirming goodness. I handled Boston this way: I dealt with each problem individually, sealing off each problem in a little sterile ziplock baggie. I certainly didn't see it as an overarching decline in my health. I panicked for awhile about the aphasia affecting my career in English, but I didn't mark myself as truly disabled. "I have a little bit of a disability. Nothing to worry about," I told my profs, individually, only when I absolutely had to.
When Rick sent me to Adaptive Services, I was resistant and bitter. See the blog. It was immature and full of psychoanalytic goodies. I wanted to be normal so badly, to fix my fibromyalgia all on my own, that I got angry. Sure, Rick could have been a bit more empathetic, but I didn't help matters along by being flippant and defensively humorous about the situation. Yeah, but except for not knowing where I live somedays, it's not that bad.
Suffering defines us, says Levinas--but only the suffering of the Other defines us. Our own suffering makes us realize the il y a, the something that is almost nothing that terrifies us all. Suffering for Levinas, for me, for three million people with fibromyalgia, and another couple million with CFS, and another few million with Parkinsons and MS and a dozen other neurological diseases-- suffering is reality for us. It's how we affirm we are still here. Sometimes when my medication is especially effective, and I feel no pain, I get scared: Where is my body? Is my leg still there? I panic. Then I get depressed because I realize that what I feel isn't numbness, but normality.
Online, the FMers call non-sick people "the normals." The name of a punk band, but also a name that should be spit out with a twitching eyebrow. They don't know how good they have it. I used to hate, and I still hate, professional sports players who whine about their bad knees. You were healthly, and you did this to yourself. You idiot.
Online, they are angry. They are depressed. They are, for the most part, middle aged moms who lived a normal life until one day they had "the flu that never went away." They are overly fat or thin, white, and feeling helpless. They spend hours thinking about being sick, about what they can no longer do, scouring the internet for breakthroughs.
Once every few months I let myself read their stories. I let myself feel helpless, and I reread everything we know about the damned disease. I reread the studies on HGH and sleep and the mysterious and elusive Substance P that are all ruining my life, and I yell at the incompetent, male doctors who tell us with exercise and sleeping pills we'll be just fine. Then I slam my laptop shut, and decide I'm not going to put up with this anymore, and fight back again. I refuse to become like the women online. I'm not like them.
But Rick was right about a few things: If I am going to be in the University, the academy, I have to get used to the idea of bureaucracy. And bureaucracies require paperwork, and definitions and contingencies and laws. As Edward Schiappa says, we can never really define anything for "real"--there is no "essence" of what is a "wetland." Likewise there is no essence of "disability" that we can know (Sorry Plato); there is no normal against which we can measure all people. But humans, says Burke, says Schiappa act as though there is, and that is what we should study. What counts as X in context Y with constraints A, B, and C?
But there are cracks. The center falls apart, it will not hold. Sometimes what counts as X doesn't have a matching solution Z. Even our carefully litigated definitions don't line up every time. The university says I'm disabled. They say I should be in their system, marked with a giant D on my forehead, and I should talk about my difficulties. They want me to succeed they say. As long as what I need falls under their definitions of acceptable accommodations.
What I need, I told them, is time. I need more time to complete assignments, I need more excused absences, I need less time at the school, and more time in an environment that does not promote stress reactions. My doctor wrote this, my mother wrote this, I told them this.
They said no.
These are not accommodations that the University is willing to make, or that they have to make, or that they will make. We have standards to uphold. This is a University--deadlines and attendance are part of our very definition. Rigor.
What is frustrating is that I know what I need to succeed. When I have those things in place, I can do some pretty amazing things, intellectually. Unfortunately, what I need are not things that can be legislated, placed in stone or even ink. I have to move with my body, flourishing and achieving on good days, and letting myself off the hook on bad ones. The University doesn't allow for that.
Bluffton did. I remember the first time I realized I was getting special treatment. It was junior year, in Jeff's poetry (lit) class. My leg had just jerked me halfway across the room and he glanced up briefly at me, did one of his little chair dances, and said "All right there, Amy?" I said something flippant about Mr. Leg having mind of his own, and Jeff continued his lecture. What is remarkable about that (if you know Jeff) is that he didn't pause to make fun of my language, or the way I had figured my body part as Other, or some other Man as Muppet moment. In fact, he never said another word about my twitching ever again. Jeff doesn't do that.
At Purdue, I was suddenly pushed into thinking about those things, into doing those things, while maintaining my citizenship in the world of the able-boddied. It didn't work, so I revoked my citizenship and became a member of the Disabled.
But I'm not going quietly. Screw the regulations. If they can't give me what I need legally, I'll have to rely on the Blufftonness I see here at Purdue. It took me 18 years to learn to ask for help, and then when I finally did, I got nothing but a sad little letter and a note in my file. Because I'm not normal, but I'm not disabled enough or in the right ways. "Obviously this is problematic for your education, but I just can't see what we can do about that."

The class I'm taking this summer, The Rhetoric of Access, assumes we know what normal is (bad). It does not assume the University can fix problems legislatively (good). It assumes disability is identifiable and thus analyzable. "Usability" and "Access" and "Accommodations" all imply that these are problems to be solved with technology or additions--aids to help one visit the Country of Normals a few times per week.
But not live there.
I am not defined by my illness, but it has shaped me, it is part of my identity. You wouldn't pour white paint over a black person to help him or her gain access to a taxi. You don't "accommodate" women in the workplace by binding their breasts so they can fit into a suit. Instead, the rules must change and thoughts about what is "acceptable" or even "excellent" ("rigor") must change. There are separate Olympic sports for men and women because biologically men have more muscle mass, and excellence must be measured as relative. We don't give up our identities as women in order to be in the workplace, so why should disabled people ("people with disabilities, Amy--the person comes first") have to load themselves down with support and services and devices to create themselves as non-disabled?
Amazon women were said to have hacked off their left breasts so they could better shoot an arrow. What no one stops to think of is : "Why wouldn't they have just designed a bow that worked in harmony with a woman's body?" The crossbow is even more efficient and poses no such breast problem. But Amazon women are held to a male standard of war, and the legends were told by men. To give the women "access" to war, they had to imagine a way around the archery problem, and so they imagined hacking off a breast. Accommodation.
It's that sort of linear thinking (Problem: Breast:: Solution: Remove) that has created the accommodations we work with today. Instead of viewing learning and reading and writing and math and science as flexible fields of knowledge with several entrances and ways to succeed, there is only one way to get an A, one type of excellence, one definition of success (One type of bow, one kind of suit to wear to the office). And so we are left with a limited solution set (remove breast, don't fight, or aim badly). If we could just imagine another way, a third way (yellow) that would not reduce the meaning of the A or change the definition of the university, then these problems would all fall out. A crossbow is still a bow.
I'm afraid I'm in too deep to talk about this in class. That I have too much at stake here. That I still have a hard time not hedging on my own disability (It won't affect my course work; it's nothing I can't handle). I miss Bluffton, where I didn't have to say any of this, where it was implicit in Lamar's nod or Jeff's chair-bobbing. If schools for the deaf are the utopias for the hard of hearing, Bluffton was a utopia for the hard of walking. And I miss it, because I didn't have to analyze my own motivations.