The GOP and Medicaid

I have relied on accommodations all my life from kindergarten to the halls of academe. I can count on one hand the times a simple request was treated with courtesy, understanding, and warmth not to mention efficiency. When I write about ableism, whether in the academy or on a common bus, I’m pointing to the fact that hostility to the disabled is rife, both in the United States and abroad. As I grow older—I’ll be 63 in March—I’m seeing how effective neoliberalism has been at creating systemic structures that make it harder for the disabled to live, and yes, this translates intersectionally across historically marginalized differences. This is hardly news to those of us who live in coverts of fragile identity, but one feels the need to keep typing. This morning I’ve awakened to see the GOP is trying to tie Medicaid to new work initiatives—a thing so heinous I can’t find the proper analogy for it—one pictures a plutocrat dangling medicine on a string before an elderly woman with a wheelchair—“C’mon, if you want this, stand up!”

When in the service of cruelty the powerful initiate stumbling blocks for the weakest and count themselves “prudent” and “efficient” one must remember that the role of democratic government is to assure the common good of the people. The only way to rationalize an opposing opinion is to say that many lives don’t matter echoing Hitler’s famous characterization of the disabled as “useless eaters.”

I am angry today. At 63 I’ve come to realize I’ve entered a doubly abject cohort—I’m disabled and old. I’m lucky because I have a job, at least for a little while longer. If all goes well I’ll get to appear useful for a few more years. But when I’m older, blinder, more inform, will I have to leap for a string? Will my job be crawling across the floor for amusement?

This morning it’s starting to look that way.

The Forehead Egg, Biopolitics, Disability

When I was in my early twenties I read a lot of poems by James Tate. If you’re an American who’s interested in poetry and you’re over forty there’s a good chance you’ve visited Tate’s poignant, Da-da universe where dark alleys and cemetery willows remind a man to have a cigarette; where Sam Beckett’s people enter cereal naming contests; where only a dish of blueberries can pull you out of a lingering funk. Somewhere in my reading I saw a line about a man who feels like a fried egg has been glued to his forehead, which is to say, he walked around that way. There I was, blind, in college, cross eyed, the streets before me erasing themselves as I moved, lonesome, stamped by the U.S. Department of Alienation, hyper-aware that a cutting remark would be coming my way any moment. I knew Tate’s fried egg was my third eye, my sunny side up stigma. Disability can feel like that.

When we, the disabled discuss the biopolitics of disability, which is to say, the economic and political performances and entrapments of disablement, it often seems, at least to me, we’re talking about eggs and foreheads as much as anything else. What kind of egg will it be? Will you cook it yourself or will someone do it for you? Just so, will you self-apply your egg or have it done professionally? (I’m not metaphorically describing disability but the stances one must take because of it.) And there’s more: will it be a free range organic egg or from a factory? Perhaps if you’re lucky it will be cooked just right.

The neoliberal egg-on-forehead (hereafter NEOF) is like the cereal naming contest above–you have to pay to win and while you may be named Estragon you’re reliably in the game because it’s now an inclusive economy. In the bad old days you’d have been forced to live in the NEOF asylum but suddenly you have putative value. A productive, non-normative worth has either been declared or assigned. You round up your pals who once lived in the ward with you and together you create a federation. You’re online. Christ, you even blog. You belong to a Single Condition User Group. You’re no longer just a person with egg on the unibrow, you’re informed, itchy, talkative, contrary, ardent if not militant.

In their groundbreaking book The Biopolitics or Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment, David Mitchell and Sharon Snyder point out that: “as medical citizens within neoliberal biopolitics we are expected to take active control of our health management regimes to a greater extent than in any time in history. This active control taking health represents the double-edged sword of biopolitics and results in the desperate necessity of participating in funding initiatives on behalf of physicians and researchers to provide the missing profit motive for future investigations of potential medical treatments for members of rare condition groups.”

You were in a special hospital not so very long ago but now you’re an anguished expert on forehead eggism because you must be. You must be because either you’ve a job and want to keep it (you’ll need an accommodation—you can’t wear standard issue hats) or you hope to have a job—or jobless, you wish to have community relevance, which means among other things you should have the right script memorized.

I for one commit to memory a lot of self-declarative language. Yesterday I went to the ophthalmologist. I told him all about my eyes. In ophthalmology land I’m a failure. You mustn’t imagine eye doctors view low-to-no vision patients as successful and autonomous citizens. I felt the need to take care of myself and control the medical narrative to the best of my ability. I wasn’t an uninformed blind person. I wasn’t in need of rehab. No. That’s not a laser scar on my left retina, that’s what it looks like. You see, I don’t need to be cured, and even if that’s something in the cards it’s not happening today. I like the eggs. Yeah you can call me Estragon.

 

 

 

Ableism in the Academy, Thoughts on Moliere

Ableism, the experience of it, requires the French adjective écœurante —for disability discrimination is simultaneously heartless and sickening. I recall the professor of English at the University of Iowa who told me my blindness would preclude me from being in his “famous” graduate class on Charles Olson. Another professor snickered when I said I was reading books on tape. When I protested the chairman of the English department said I was a whiner and complainer. I wept alone in the Men’s room. My path forward to a Ph.D. in English at the University of Iowa was stymied. This was a full six years before the ADA was signed into law. Who was I to imagine a place at the agora’s marble stump?

I had an MFA degree from the creative writing program at that same university and I just went ahead and wrote books and sometimes appeared on radio and television and I wrote for big magazines and over time I received tenure at The Ohio State University. Later I went back to teach at Iowa despite my earlier experience and these days I’m at Syracuse. I’m a survivor of sorts. I’m a blind professor. The odds were never in my favor. Somewhere along the way I began thinking of Moliere in my private moments and I laughed because after all, every human occasion is comical and Moliere recognized the comedic types one encounters in closed societies better than anyone before or since.

It doesn’t really matter what institution of higher education you’re at, if you’re disabled you’ll meet the following Moliere-esque figures. The heartless and sickening ye will always have with ye if you trek onto a college campus. You’re more likely to spot them first if you hail from a historically marginalized background however, the ecoeurantists are more prone to blab at you if you’re disabled, especially behind closed doors. Ableists love closed doors. All bigots love closed doors.

The “Tartuffe” is an administrator, usually a dean or provost who will tell you with affected gestures that he, she, they, what have you, cares a great deal about disability and then, despite the fact a disabled person has outlined a genuine problem, never helps out.

The “Harpagon” is also an administrator, but he, she, they, can also be a faculty member. The Harpagon is driven by rhetorics of cheapness. It will cost too much to retrofit this bathroom, classroom, syllabus, website, etc. If the Harpagon is a professor he, she, they, generally drives a nice car.

Statue du Commandeur: a rigid, punctilious, puritanical college president—“this is the way we’ve always done it. If we changed things for you, we’d have to change things for everybody. Yes, it certainly must be hard…” See:

The Geronte: when his son is kidnapped he says: “Que diable allait-il faire dans cette galère?” (What in the deuce did he want to go on that galley for?” In other words, he brought this upon himself. “Really, shouldn’t you try something easier? I could have told you.”

These are the principle types of ableists. I invite you to add your own.

The one thing they have in common besides a privileged and thoroughly unexamined attachment to the idea that education is a race requiring stamina and deprivation, is that they all genuinely believe accommodations are a kind of vanity.

 

Ableism, the Academy, and Good Old Jean Jacques Rousseau

The poet W. H. Auden wrote: “Educational theory begins when society has become differentiated, when different classes are living so differently, and doing such different things that the question arises: ‘What shall we teach and to whom?’”

I have been in mind of this straightforward question for some time now, especially as I’ve been wrestling with the deficiencies of my own education, and in particular how that education relates to disability. As Auden might have it: ‘What was I taught and who did those teachers imagine I was?’”

The answers depend upon whether or not you believe the nature of society is static—which is to say whether you think social relations where disability is concerned are changeable. Here I am piling a question on a question. Can disability ever slip the knots of ableism and be understood as a fully dignified dynamic of cultural life? (I take it as given that disability is no better or worse than any other fact of life.)

Okay. Since I don’t think society is static, at least since the time of Rousseau (everywhere we are in chains, post-innocent, and humankind is collectively capable of freedom) I think disability rights are a barometer of progress. Civil rights reflect modernity’s belief that all individuals are unique. After Freud all people are unique. If so, then good old Jeffersonian law must assure our unique equality.

Now imagining the law could guarantee my dignity was foolish yet I’ve been guilty of this variegated disappointment, of letting it get to me, for a long time now. How long? Since the mid 1980’s when the Americans with Disabilities Act was being built. Like millions of disabled in the U.S. I thought the adoption of civil rights meant throwing off chains. I allowed myself to believe this. I know I’m not alone.

And here is where my education failed me, my high modernist, early post-modernist, calculating small “d” democratic, structuralist-psychoanalytic education—it failed me. Teachers failed me. I was allowed to believe the law could take the place of civics. Of civics I was taught nothing save that every citizen will be equal under the law. Here is the specific failure: I was taught that individualism is the core of identity, that identity is the well spring of citizenship, and that laws will take care of equality. Of course I read Foucault. I understood the precarity of life under the state, saw how language can and often does fail us.

Nothing in my education prepared me for structural ableism.

For years I’ve allowed myself to believe that my eloquence, my irony, my belief in the law, would mean success where disability is concerned, and by this I mean “as lived” and by this I mean “in the workplace” and accordingly I have been navigating without some important details.

You see I thought the law and self-declared dignified individualism were all I needed. These things are not without their importance, but they weren’t enough.

I’ve been physically assaulted in the workplace; denied accommodations; told during meetings that my need for accessible materials would slow down progress; told to “get in line” behind other non-disabled faculty when I needed sighted help in the form of a grad assistant; been lectured to by so many overtly ableist administrators about the difficulty of disability—how it gums up the works of the system—this is a long list, forgive me—and in all cases I imagined my capacity to be clear, direct, and persistent would solve the problem. That was my deficiency. From my mid thirties onward, believing overmuch in the ADA and the power of my language, I failed to see how profoundly ableism cuts down the disabled, even in the most self-declared progressive work spaces. Yes it’s a matter of note I’ve been making my way in higher education.

Boo hoo for me, didn’t everything I ever read about oppression allow me to see the deep and broad discriminatory practices in the big bad world? Of course. But my mistake was to think, to allow myself to think that equality for the disabled had come.

How foolish I feel. Worse, how beleaguered I am after years of being treated badly as a disabled student and scholar.

Ableism is ubiquitous. Higher education is rife with it. It’s in the street. It’s on the bus. It’s in every corner of the civic square. It is an unholy master in the world of American medicine. Ableism is shrugs, hoots, snickers, red tape, ugly information technology, badly designed airplanes, inaccessible voting places. It’s what’s for breakfast.

Ableism is worse today than when the ADA was adopted. Like the brutal renaissance of racism and misogyny and homophobia it’s out and its everywhere.

It exists in the classrooms, the technology labs, the science classes, the lecture halls. It is so customary in higher ed that it’s no wonder three quarters of students with disabilities who matriculate to college never graduate.

And ableism exists in the silence of non-disabled faculty who know how ugly it is for students and staff who believed modernity’s promise, post-Freud, that they could also be individuals.

 

 

 

More About Being Blind in Higher Education

Recently I published a post about my life as a blind professor. I left a lot of things out, largely because the dispiriting narrative is a long one. In effect, I was aiming to get at the major issues—lack of respect from ableist colleagues, a generalized failure to make teaching and learning environments not just accessible but welcoming, the relentless difficulties encountered in the built environment. But one important thing I left out is that I’m demoralized by how difficult it is to get any traction on whatever is meant by “inclusion” since I have to fight for every minor accommodation. If this is true for me, and I’m well known, what must it be like for younger scholars?

When I was asked to teach abroad four years ago, and
I found the city in question was not guide dog friendly, I asked for a sighted companion to keep me from getting run over or lost. The university said no.

To this day I don’t know whether I’ll ever be able to teach abroad.

When I’ve raised this issue with successive administrators they shrug.

This is what I’m talking about: the shrug. The ableist shrug.

Imagine telling a Fulbright Scholar whose work has been translated world wide that he can’t have a life saving accommodation when teaching abroad. What kind of person shrugs this off?

The trap is that by writing about these things I continue to look shrill to the very people who are accustomed to ableism’s business as usual.

I can be painted as angry. That’s another dynamic of ableism.

I’m not angry. I’m appalled.

A few years back the Philosophy Department at Syracuse held a special summer session on disability. They had no accommodations. Disabled people came and had to leave. One famous disability studies scholar departed in protest. I’ve not heard of an apology from the department. We still hold events that are disability unfriendly across the campus. Am I bad for saying so? I don’t think so. Lonely perhaps.

What gets me is this: most of the faculty with whom I work or who I meet when traveling believe disability is exotic. Inwardly they think: “isn’t it niece that we let someone like this into our domain?”

But engagement and curiosity do not happen.

Moreover, because there aren’t many disabled faculty on any campus, our struggles are lost on the majority.

Of course I say: “someday you’ll need accommodations and then you’ll thank me for putting my hand in the bees nest almost daily.”

On Being Blind in Higher Education

I’m a blind college teacher. There should be nothing remarkable about this. Yet my daily presence haunts the academy. At all three universities where I’ve held tenure I’ve met obstacles to my participation in everything from meetings, classroom teaching, library research, online systems, even simple sporting events. All these basic things have been largely blocked.

Bad as these stumbling blocks are, and I promise you they’re lousy, what’s worse is the extraordinary degree of ableism I’ve met over the course of my roughly thirty year teaching career. Setbacks are one thing, perhaps even to be expected (at least initially) but prejudicial behavior is worse and I’ve experienced it over and over again. I’m a well known blind person. I have managed despite these problems to achieve “senior status”—that necrotic term for full professors.

Yet I’m not a full professor at all. I’m essentially a steerage passenger on a luxury liner, one who has wandered onto the wrong deck. This analogy should be ridiculous but it isn’t.

I’m still waiting for accessible “on boarding” materials at Syracuse University though I came here six years ago. I asked for them four times. Because I’ve never received them I know less about the place where I work than almost everyone.

Getting accessible research materials in a timely way is grueling and often impossible yet I’m expected to teach as much as anyone else—oh, and also to be a leader in my field.

A colleague criticized me not long ago for speaking out about accessibility problems, saying, “you set back our reputation.”

In the meantime disabled students tell me almost weekly how they’re patronized by faculty and how difficult it is for them to get the help they need to succeed. What do I do? I complain. All too often my reward for speaking “behind the curtain” to multiple administrators about access problems is that I’m essentially conceived of as a malcontent. The eye rolling says it all: I should go back to steerage immediately.

My “non-disabled” faculty colleagues are not generally reliable allies. Even the ones who theorize disability and confront the social and economic history of disablement are seldom on the front lines when it comes to speaking up. Can’t get into the famous basketball arena with your service dog? That’s too bad. We’re all going to the game tonight.

A famous scholar once wrote about the “spoiled identity” the disabled are forced to endure—have been forced to suffer—every day. The word for this is stigma and everyone who hails from a historically marginalized background knows what it feels like. There’s a moue of unhappiness at the sight of you. Many sighted people think the blind don’t know it when it comes but we do.

Lately blind students have been filing civil rights complaints against colleges nationwide. I have not done this because I keep thinking my persistence and whatever in me passes for eloquence will pay off.

But you see, there’s the problem. I want a broad coalition of faculty to speak up.

Disability and Whatever Is Meant by the Right to Life

I’ve always been displeased that anti-aborttion Christians have colonized the term “right to life”—effectively trademarking it. I support a woman’s right to choose. I also support the right of disabled people to enter this world. The two positions are antithetical. I know this. I’m a person with a disability. I know a great deal about cognitive dissonance. My “every day” is pure cognitive dissonance. 

Do fetuses have a right to life? What is “the right to life” precisely? Who defines that right? All too often America offers unwanted children lives of neglect and poverty. Is poverty a right? Forgive me for writing like a sophomore in Ethics 101 but too many conservatives utter the RTF slogan while simultaneously voting against social services that help women and infants succeed—and yes, they also vote against education and medical care for the disabled and elderly. 

The corporate medical community knows very little about disability but what they do know they don’t like. Genetic counselors routinely advise  against bringing disabled fetuses to term. Blind? No! Down Syndrome! No! I am horrified by this. Not long ago twin brothers in Belgium who went blind in middle age were allowed to end their lives under the nation’s physician assisted suicide law. Doctors agreed: blind life can’t be good. 

In the end I stand for positive imagination where disability life is concerned. I stand for full education and medical care for every citizen. Yesterday I applauded on Facebook Ohio’s law protecting unborn Down Syndrome fetuses from abortion. The trouble is, any obstacle to abortion is in fact a setback to a woman’s right to decide. This outcome deeply troubles me. The disabled may in fact be political red herrings in Ohio. Certainly Governor John Kasich opposes abortion and has a miserable record when it comes to supporting medical care and education.

In a society where women can’t raise children without fear of poverty and inadequate opportunities for health care and education both for themselves and for their children, I still stand for a woman’s right to choose. What Kasich did yesterday is cynical insofar as he’s not on board with progressive social programs. I know my desire to support disabled life is being manipulated. But I can’t shake it, this pervasive feeling that disabled life matters. Cognitive dissonance, yes.