The ADA@30: The River

They go down to the rivers, the myth makers and killers. So what’s your approach to the stream? Thinking broadly can the law be the Danube or Mississippi? The essential question: was it written with hope or enmity? I say the ADA was written in hope. I say there’s some enmity “in there” oil slicks on the water, like the proviso that America’s churches don’t have to be accessible; the word “reasonable” as it pertains to accommodations—as if any request for accessibility assistance is inherently suspect. Accommodations are just what they sound like, the Archimedean thing, simple levers. 

I say the ADA is a river. I say we should sing Pete Seeger’s Clearwater song. I say the ADA is all of us—even you who don’t think disability applies at all to your life. The life you now inhabit takes twists and turns. And so your life is also like a river, one with vows bubbling just under the surface. I say the ADA is a river. I say you should look under the surface of your own life. 

I like these lines by the Polish poet Czeslaw Milosz: 

Leaning on a cane at sunset

I may resemble a gardener 

Who has planted and reared a tall tree.

I say don’t think exclusively of the ADA as a set of regulations. Think of it as the river of new beginnings. 

Yes we need to care for our river. There are those who would pollute its waters—have done so, continue to think of ways to foul it. 

But hear the counsels of the inner eye and see the river. 

Disability Visibility: the ADA @30

Writing as a poet let me venture that our understanding of tears, their history, or put more darkly our suppression of them is the paramount subject now in America. White people who either do not understand the tears of Blacks and indigenous peoples or they willfully suppress knowledge of them, which gets me to my point: confederate statues are engines to aid white people quash tears. When another statue comes down I say, “there goes another tear quelling appliance.”

In the disability community where great literature has been steadily rising for over two decades we’ve seen a potent reckoning with tear crushing, not as victimization, the tabloid weeping of television talk shows, but tough, ironic, edgy poetry and prose about the true histories of cripples. There are so many excellences. Check out Molly McCully Brown’s collection of poems, The Virginia State Colony for Epileptics and Feeble Minded. (I’ve not yet read her new collection of essays Places I’ve Taken My Body but it’s on my short list.) 

Consider now an extraordinary new anthology edited by Alice Wong entitled Disability Visibility: First Person Stories for the Twenty-first Century. The disabled are not supposed to cry; we’re supposed to be inspirational; the ghost of Tiny Tim haunts every person who walks with a cane, rolls in a chair, navigates with a guide dog. Yet poets and literary non-fiction writers bring forward righteous cries, howls, odd giddy laughter that unsettles, yawps, and sing of ardor and truth. 

This book holds so many awakened voices and is so expertly edited you’ll turn its pages (or screen read with your talking tablet) in a readerly condition of glory. One has this with great literature. “At last someone has said this!” 

There are so many treasures in the book I fear I’ll overlook some while typing on my talking computer. I say read the entire book. Give it to friends. Buy several copies. (A trick I’ve had for years is to buy extra copies of poetry volumes and leave the on bus seats.) (This is what I do instead of giving to the United Way.)

Consider Ellen Samuels essay “Six Ways of Looking at Crip Time” (what could be more apt for a pandemic struck nation?) where she writes:

“Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently—or not so silently—at the calm straightforwardness of those who live in the sheltered space of normative time.”

As a guide dog traveler I’m invariably “out” of time and I spent years lamenting it until after reading Samuels I understood that time keeping is simply another instrument of industrial life, normalcy written on human bodies, a kind of scarring. But despite the predations of time the disabled can now imagine their own futures. Leah Lakshmi Piepzna-Samarasinha writes: 

“Yet as disabled people, we know that one of our biggest gifts is the Mad, sick, disabled, Deaf dreams we are always dreaming and have always been dreaming, way beyond what we are allowed to dream. Not in the inspiration-porn way that’s the only way many abled people can imagine that disabled-people dream of “not letting disability stop us!” Wanting to walk or see or be “normal” above all costs, being a supercrip or an inspiration but never human. I’m talking about the small, huge, everyday ways we dream crip revolutions, which stretch from me looking at myself in the mirror—disheveled and hurting on day five of a major pain flare and saying, You know what, I’m not going to hate you today —to making disabled homes, disabled kinship, and community networks and disabled ways of loving, fighting, and organizing that not even the most talented abled could in a million years dream up.”

“What we are allowed to dream” is a resonance, a revolution, and it stands behind every poem and literary essay in the book. Consider the Harriet Tubman Collective’s assertion “that any struggle against white supremacy must also address all of its interrelated flaws—including ableism and audism.” Or consider this from Patty Berne, as told to and edited by Vanessa Raditz, on disability, queerness, and eco-systems:

“Let’s start by openly, joyously proclaiming that we are natural beings, not aberrations of nature. We find healing and justice in the realm of queer ecology, a burgeoning field exploring the vast diversity of gender and sexuality that exists in nature, such as the more than fifty species of coral reef fish that undergo one or more sex transitions in their lifetime, completely transforming their behaviors, bodies, and even reproductive organs.

When we begin to see the planet through this lens, we remember that the entire world has biodiversity that is precious, necessary for our survival, and deeply threatened. Whether we’re looking at ecology, society, or our human culture, diversity is our best defense against the threats of climate change.”

Wong’s stunning anthology gives us the true meaning of the ADA@30. We grieve, imagine, deconstruct the old, create spaces for the new. 

Speaking as a disabled man I’m a walking sign. It doesn’t say panic but it does say “this man will upend acquired habits and may cause headaches, cramps, even some dizziness.” The waitress leans in close to my wife who seems normal enough and with a nod in my direction says: “what will he be having?” I haven’t even opened my mouth and I’m a crank as my presence upsets custom and in most settings custom is what passes for belief. Disability is implicitly an overturning of practice which means it’s suspect and maybe it’s worse than that because it forces a revision of actual behavior. People living without disabilities, at least temporarily, genuinely dislike this. 

Small wonder I love this book so much. Equally small wonder that the ADA@30 matters so much. 

The ADA @30: “Blindness is Easy”

Blindness is easy, just ask the advocacy organizations—it’s only impediments are the public’s old fashioned attitudes. I agree. Oh but the public! How it clings to its graffiti! Here are synonyms for blindness from the good old thesaurus: “irrational”; “unperceiving”; “unperceptive”—there are many more pejoratives. 

Being blind means always living the life of an ambassador for consciousness and intelligence in an unfavorable nation. The locals in that nation think deficiencies of the eyes are omens or auguries, as if blindness is the torn entrails of birds in the time of Caesar. Even the well dressed and cheerful Human Resources ladies and gents hear echoes of superstitions as they discuss “accommodations” with a blind job applicant. Inside the HR rep is a tiny voice, like wind whistling through a broken window, it says, “make her go away, please, this person is too much for me, for us…” (Too much, by the way, is the core syntax of all bigotries.) 

Even within awakened disability advocacy circles, the sighted imagine blindness is separate. Closed captioning is often available when videos are shown at universities but never audio description for the blind. If you raise your hand and ask for it, there’s a moue of impatience, even from the faculty who teach disability related topics. “Too much.” Or: “your time hasn’t yet come.”

Blindness is easy once you get the hang of it. You learn about talking computers and Braille displays, learn how to safely navigate the public square, take the bus, (if you’re lucky enough to live where buses run) have an iPhone with an app that reads signs and the labels on jars. 

Easy isn’t quite the right word, let’s say it’s “do-able” but add the caveat that being ambassadors in the unfavorable land, the blind must make it all look easy, must insist that it’s so. 

I’ve been lucky to have a job in higher education for thirty years. I’m even tenured which is statistically unlikely. But here I am at 65 still arguing for basic accommodations not just for myself but for all blind staff and students who choose higher education as a path. I’m the haruspicator—the Roman who spreads the bird entrails on hot stones and reads the future according to the spatter. The future will only be as good as the public finally entertaining that the blind belong. Not as ambassadors or outliers. Not as people who have to keep insisting on access to everything from web sites to libraries, but as fully included human beings. 

We’re not unperceiving unless of course you show films without audio descriptions. My university has no plans to solve this. I get invitations to their annual “disability rights film series” and every year it’s not accessible for people like me. So I don’t go. Later I hear three wheelchair using students exulting about a flick they saw. I get to be the unperceptive one. 

Talking back is nested within ambassadorial protocols. You can’t say you’re fed up. (Which I have.) Can’t say “why do the blind get no respect?” (The Dangerfield gambit?) because if you do, then you’ve violated the prime directive that it’s supposed to be easy—the blindness balm of Gilead for the sighted…

You can’t say “when is our time coming?” Because then you’re a behavioral problem. 

Can’t say “here comes the man or woman with the dark glasses and the cymbals….” A nice pun. But you’re not supposed to be loud. 

The blind in higher education largely have a rotten time. 

I suspect at any moment the doorbell will ring and the central scrutinizer of advocacy ambassadors will take away my diplomatic instruments.    

Meanwhile other synonyms of blindness are “dim”; “obtuse”; “dull”; “witless”—all of which mean you don’t have to listen to me, even if I am a full professor. 

The ADA@30 “Campus Cocktails”

I’ve met hundreds upon hundreds of college faculty throughout my life. I grew up on campuses. My father was a professor, then a Dean, and eventually a college president. My childhood was filled with cocktail parties and chatter. Over the course of my own career I’ve taught at four well known academic institutions and have served in various administrative roles. What I’ve come to understand is that higher education still functions like those cocktail parties of yore and I can attest as a blind man that it’s a party that doesn’t love the disabled. 

My wife worries when I write so candidly about academic ableism. She fears it will brand me, that a prospective future employer will be troubled by my candor. I worry about this also. Yet I can’t shake off what I know. The party is chummy and its held in houses without ramps, where the host doesn’t want your guide dog, where you’ll not be able to use the rest room. And when the clubby faculty actually see you they’ll quickly look past you to see if there’s someone better to talk with. 

Cocktail parties are engines. Their fuel isn’t the vodka, it’s self-contempt disguised as jocularity. As a boy I heard the terrible laughter of the professors—a horse laugh; the basso profundo guffaw; various squeals. They were “me me me” chortles. They scared me. Hawks, wolves, rapacious fish. 

The contempt of faculty for other faculty is an old story. I’ve seen feminist scholars who don’t like other women and who’d do anything to undermine their women colleagues. I’ve seen faculty hiring committees sneer at a job candidate who hailed from a working class background; seen faculty of color dismissed in coded lingo only the chummy would use—his work needs more grounding; further evidence from the published record, etc. 

Ableism in the academy is rampant and college faculty pass it around without scrutiny because it’s the last easy bastion of smug satire—contempt disguised as jocularity—chuckle, if you need an accommodation sonny you’re not a real student. You certainly shouldn’t be on the faculty. 

The professor who advertises that he studies “micro-aggressions” is an ableist. He’ll be the first to tell you if you were a nicer person you’d get the accommodations you need and really it isn’t structural ableism that prevents you from having what you require to work in dignity, it’s your pesky attitude.  Be nicer little fella. By the way while you’re up, can you get me another drink?

The controlling metaphor of higher ed is the boozy get together. Once you’re in, even if you hail from a historically marginalized background yourself, you’ll want to do some sneering about the aspirants who want educations in the land of exceptionalism. The super ego of the academy reflects the ethos of the private club. 

If the boy I was, the one in the attic, who feared the monstrous laughter of the professors had chosen the career outlined for a blind citizen of that era I’d have learned how to cane chairs or sell magazines. Higher ed was my route and yet the road was and is unfriendly just as it is for Black students and all others who are claiming their citizenship and rights from outlier positions. 

But still I expected more from the professors. I expected that by this time in our nation’s history they’d have put down their drinks. 

Some years ago I wrote a little send up “poem” for the professoriate: 

The Professors

Triflers beware! The professors are here:

Punctilious, mindful, on the move,

They’ll flush you out, invest your reveries,

Or close your brown studies. It’s you they’ve watched

Woolgathering, or nonchalant, improvident- tant pis!

Micawbers, slackers, skimmers, here’s your match,

The professors have arrived: the robed Savonarolas!

Leap in the dark, grope or guess, send up a trial balloon,

Rummage, ransack, winnow or appraise–

Inquisitors will grill you: mooncalf, booby, lout, buffoon.

It’s time for gumption, prudence, brains and mother wit:

A bluestocking’s wrangle, a sine qua non;

Alas, poor duffers, bookless, smattering, you invent

A limerick, an Irish muddle, clearly heretic.

O the professors are here: praise Mentor!

They swoop through the long schoolroom,

Vertiginous, oracular, confirmatory, O rodomontade!

Yes you can argue the professors don’t like anybody. But notice the poem reveals how the uneducated serve as metaphors for dumpling students or colleagues they so ardently despise. 

Am I being unfair? The question is absurd. American higher education is the last bastion of nearly undivided disability discrimination. Just visit this website:

The ADA@30: “The Small Things”

Well it comes down to this: what can you do today that will be any good? One says it with hope, without avarice. I don’t say “how can I screw my neighbor?” Or: “who can I shove behind barbed wire?” My guess is you don’t say the latter things either. As for the former, I’ve no idea how you my readers start your days. Let me add it’s just a quirk of mine, one I’ve had since childhood, that I imagine the day as a clean slate and think of something good I can accomplish. It’s how I roll as a wheelchair using pal of mine says. 

I know there’s something of Pollyanna about it. Smart people are cynical, toughened like alligators, seasoned with Nietzsche and maybe some Foucault. Goodness is suspect. Why, hell, there’s no goodness at all. It’s just another fetish, a commodity, a greeting card trick. When righteous people say “Black Lives Matter” they’re affirming the good. Those who bristle at the phrase (which is more than a phrase for its a cry of the heart) are proclaiming in no uncertain terms that historically marginalized and oppressed peoples can’t proclaim “the good” for yes, the word doesn’t belong to you. “All Lives Matter” means white people will imagine goodness so people of color won’t have to bother anymore. 

Which is why I suppose I get up and say what can I do today that will be good? Disability is misunderstood, disliked, un-cherished,    treated to sufferance and hostility. I learned all this. Learned it at school. Learned it on the streets. At the university. And yes I keep getting heaping spoonfuls of ableism because as the old commercial used to say, “it’s what’s for breakfast.” (Ableism, the other white meat.) What can I do today that will be good? 

Let it be a small thing when the times are especially heavy. Write a friend in distress. Thank someone for their work. Praise those who are praiseworthy. Don’t get down into the pit of snakes who live on Twitter and Facebook and Zoom. I’ve made this mistake, made it too often, imagining my affirming flame of righteousness will change minds—but social media is not a place for the small good. Play an instrument, write from the heart that beats in your wrists, feed a lost dog. Let it be a small thing.

Lately I’ve been writing about the Americans with Disabilities Act which is thirty years old next week. There’s not much poetry in the ADA. You can find poetry in the law but not often. But of the good there is much. Make the ways straight for those with altered bodies. Let them in. Affirm they are part of the village, the school, the bus ride, the library, the media, the simple, everyday world which we call it daily life. 

Let it be a small thing that you say to your fellow employees, “hey let’s learn sign language!” Let it be a small thing, say you’ve hired a blind person, so you say “let’s listen to her.” 

Today’s good thing: let’s listen to those unlike ourselves. Even when it might make us sweat. 

The ADA @ 30: Essay 11, “Rope-a-Dope”

Dear ADA @ 30:

You have made it possible for people with intellectual disabilities (that hoary and inelegant phrase) to live in the community. You’ve made it possible for wounded veterans returning from combat to stay in the military; made it possible for disabled students to get mainstream educations; there are so many triumphs in your corner. You’ve educated millions around the globe. Not bad my friend. And perhaps the best thing of all: you’ve withstood your enemies, done the Muhammad Ali Rope-a-Dope. Conservative courts and business interests have tried to defeat you but they failed to understand you are the American spirit. 

Dear ADA: I’m a poet. I don’t know much about the law save that I read broadly in many disciplines. Poetry is a guarantee against specialization but not an obstacle to focused curiosity. I love knowing that they composed music for surgical procedures before the age of anesthetics. While they sawed off your leg you could hear a nice quartet. I love knowing that double hydrogen bonds make DNA possible. O how sublime is the very electrolysis of life! And in terms of “the law” I like the axiom that normal people teach the rules but outliers teach the laws. You’re the Queen of the Outliers and you continue to “punch up’ as they say nowadays.

The poet in me likes it that you’ve changed the way disability is used as a matter of law. I’m thinking in this instance of Romer v. Evans, in which the US Supreme Court nullified an amendment to Colorado’s state constitution which made it legal to discriminate against homosexuals, lesbians and bi-sexual citizens in matters of employment, the receipt of social services, and the right even to claim discrimination. The Supreme Court wrote that the Colorado amendment imposed a “broad and undifferentiated disability on a single named group” and added that the impulse for the law was “inexplicable by anything but animus toward the class it affects; it lacks a rational relationship to legitimate state interests.”

OK. I’m just a poet but this is the first instance so far as I know of the Supreme Court using disability as a juridical metaphor in the service of human freedom. I may be wrong about this but I suspect I’m right. And I suspect the court’s understanding that physical embodiment can be degraded merely owing to bio political considerations was informed by the shift in consciousness brought about by you, Dear ADA. 

Oh how I love you. Let me count the ways. 

The ADA @30: Essay Ten “Dear Friend”

Dear ADA@30:

There are so many things I wish you could hear but you’re made of wood. No wait that’s not quite right. A man can talk to trees. Hell, a man can even talk to a cheese. How do you talk to a law? 

We can only talk back to laws. Even while framing a law our speech sinks into the past. The illusion is that we’re going forward.

Dear ADA: you are a zen koan. We head to the future armed only with the past. Dear ADA we may have ideals but they’re nebulous and misty as when, answering a child’s question “what do you want for Christmas” you reply “oh, just give me universal peace.” 

ADA, now that you’re thirty, our wishes are still “claggy” as the British would say. The disabled are still in the fog. 

Some say it’s your fault but I’m not one of them. It’s not your shortcoming that some say you’re an “unfunded mandate” (a phrase so omnipresent it’s like spearmint chewing gum) and which means “we’re being forced to put in a disability accessible bathroom because we’re remodeling our local MacDonald’s franchise and there are no zero interest dollars by way of  loans, no help for us from “corporate” etc. 

It’s not your fault that those who call you “Old Unfunded” are the same people who oppose  federal and state social programs of any kind. 

It’s certainly not your fault that those you’re designed to protect are deemed burdensome and inconvenient by the Chamber of Commerce. 

If you’re judged by your enemies you’re doing good work my friend.

How do you talk to a law? 

The problem is that you’re latitudinarian rather than sectarian,  you’re Jeffersonian not Hamiltonian. You come from the liberal traditions of humanism. Perhaps you’re the last gasp of the enlightenment. For all I know better times are coming but in the rowboat I can’t see what’s ahead. We keep rowing. 

Dear ADA: the disabled and their allies are rowing just as you asked us to.

Yes, your foes still think you’re a newfangled guild of St. George, some utopian trick designed to ruin our nation’s currency by putting Braille on dollar bills. 

At a famous arts colony not long ago I complimented a staff member by saying, “hey, look! You put in an elevator so the disabled can get up and down the stairs!” “Oh,” he said, “they made us do that!”  

So much for disability as inclusion. You were again “Unfunded Mandate.”

It’s not your fault the abled classes still think cripples are inconvenient. 

It’s not your fault that Erving Goffman’s “stigma” sill permeates society. 

It’s certainly not your fault that as legal scholar Mary Anne Franks puts it, the US constitution is framed on a narrative faleshood: 

“America is built on a lie. That lie inheres in its foundational text, the Constitution of the United States, which begins in the false claim to speak of and for “we the people ” even as the majority of its population – in particular black men and all women – were denied access to the most basic forms of political participation. This act of simultaneous symbolic inclusion and material exclusion has never been fully acknowledged or confronted, which is another way of saying that it has never really ended. ”

Excerpt From: Sarat, Austin. “Law and Lies.” Apple Books. 

Dear Friend, these things are not your fault. 

You make it possible for the disabled to demand symbolic and material inclusion against so many odds.

Thirty for Thirty on The ADA: “Masks”

As we near the thirtieth anniversary of the Americans with Disabilities Act I’ve decided to post thirty short essays about the law, the anniversary, and the cultural impact of #ADA @30. I’m doing this as a disabled person who’s lived half his life before the ADA. I’m reflecting on the “before and after” of the law.

Essay Nine: “Masks”

The American writer William Gass once wrote “culture has completed its work when everything is a sign.” It’s an ominous statement if, as I do, you believe culture moves like a river and is never still. Progress rides on currents. Still I’ll take Gass at his intended word—small “c” culture demands petrifaction, signs to rivet the mind and stop all thinking. Gass was warning us and his employment of culture has invisible quotation marks. One may also fairly say this about disability signs. They circumscribe the disabled, are sometimes a matter of envy among able bodied people who resent our perceived privileges, and though our signs are liberating, they can entrap us—they’re outdated the moment we post them, they don’t represent real humans. And who is really disabled anyway? It’s a 19th century word. It’s as outdated as antimacassars on horsehair chairs.

The ADA @ 30 cannot know this. It’s a living law but not your disabled neighbor. That the very word disability needs to be retired is unquestionable even as perhaps, the opinion may not be universally popular. We the disabled have fought too hard for our place at the table. We’ve fought too hard for our dignity and our sense of inclusion. Giving away the disability word would be foolish. Even a kind of defeat.

But one thinks of Willian Gass. Disability is an ossified sign and the public that imagines itself without disability (a fantasy if ever there was one….like believing in the tooth fairy) takes it to mean lack of capacity. The ADA @ 30 cannot fix this but its a real problem. The employer who turns away disabled job applicants believes culture has completed its work—thinks disability means lack of intelligence, stamina, gumption, power, potential, on and on it goes.

We change the universal wheelchair logo to make the wheelchair look more mobile, even a bit jazzy. I like it. Every wheelchair user I’ve ever known was both mobile and jazzy. This is true of blind folks whether they travel with a cane or a dog; true of the deaf who are poets of the vernacular and the sublime, sometimes making the the same thing. It’s true of my autist friends. They all know what Emily Dickinson meant when she said poetry makes the top of her head fly off. Autists move in spaces even NASA doesn’t know about.

Disability activists have claimed the world cripple to offset the cultural bone yard of the “d” word. As the late Nancy Mairs wrote” “as a cripple I swagger.” I’ve always liked this. I also admire the idea of “crippling” as a troubling of normal-think. Disabled lives are inventive lives; we are indeed “troubling” to normal people but we offer tons of imagination. Siri came from the blind and not your business as usual dudes.

I’ll take cripple over disability but main street still doesn’t see it. We need an expanded word for citizen as Black Lives Matter tries to tell us, as the Me Too Movement tries to tell us. I’m not abled or disabled, I’m a citizen, equal to you and you.

I like universal citizen.

This means I’m imagining citizenship as achievement, accomplishment, capacity.

Now I’ve a theory of sorts. Lost in the American culture war over wearing masks in a pandemic—lost in all the back flips from the right—lost in the arguments (such as they are) about the freedom to not wear a mask, the liberation from government control, the “don’t tread on me” flag waving—lost in all of this is a fundamental ableism, a sign, a William Gass irony. Masks make people look ill; appear disabled; resemble second class citizens. This is primitive ableist exceptionalism smothering science and common sense.

The disabled know all about it. I remember the cab driver in New York City who told me I was obviously a victim of voodoo. How else to explain blindness?

The cripples know we appear sinister. And the maskless believe they’ll be stuck forever in the land of broken toys if they succumb and do something that would save their lives.

Thirty for Thirty on the ADA” “Maybe Tomorrow”

As we near the thirtieth anniversary of the Americans with Disabilities Act I’ve decided to post thirty short essays about the law, the anniversary, and the cultural impact of #ADA @30. I’m doing this as a disabled person who’s lived half his life before the ADA. I’m reflecting on the “before and after” of the law.

Essay Eight: “Maybe Tomorrow”

Disability is everywhere once you learn to look for it. Elvis Presley had continuous high grade pain the last ten years of his life. Samuel Johnson was legally blind, suffered from seizures, and may well have had a variant of Tourette’s Syndrome. The people in my neighborhood are touched by disablement. Some show it. Others do not. Normalcy, the belief in it, the animadversion to live it or else is the most destructive fiction in the world.

What does it avail me to say so? And why do I keep saying it?

In her excellent book The Contours of Ableism (an elegant title I think) Fiona Kumari Campbell imagines the structural and attitudinal dispositions against the disabled as residing within a telos or set of illusions that maintain the non-disabled identity. When I write against disability discrimination and the privilege indexes of ableism I’m engaging in the work of all disabled activists by asserting the truth of the matter:

“Ableism refers to: a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then is cast as a diminished state of being human.”

So if there are so many disabled people around why does compulsory normalization still rule the roost? The contours of ableism are protean rather than strictly geometric. Fiona Campbell writes:

“Whether it be the ‘species typical body’ (in science), the ‘normative citizen’ (in political theory), the ‘reasonable man’ (in law), all these signifiers point to a fabrication that reaches into the very soul that sweeps us into life and as such is the outcome and instrument of a political constitution: a hostage of the body.”

One of the interesting things about ableism is that whatever form it takes it occupies the future perfect. There will be time enough to make things right for the non-normals but not today. One may fair say “not today” is the motto of the thing. Non hodie in Latin. Picture a flag bearing the image of an indolent house cat. Not today will we question our assumptions about the majority of bodies on the planet. Ableism also refrains from saying “maybe tomorrow.”

As we contemplate the ADA @ 30 this is its signature, the stitching that holds the book together: “maybe tomorrow” has been retired.

We don’t say “maybe tomorrow” your disabled child can go to school.
Don’t say “maybe tomorrow” you can vote, go to a football game, go shopping.
We don’t say “you can’t attend college, not today…”
The ADA put a stake through maybe tomorrow.

This is in fact what people who hate the ADA are always most worked up about. They wanted their “maybe tomorrow” to last forever. Rather than see disabled customers and their friends and families in their shops and restaurants, small business owners banded together and cried foul—lead most notably by Clint Eastwood—we don’t need no stinkin’ ramps or accessible bathrooms in our tony little “shoppes”—sure the disabled matter, but not today, not now, not thirty years after the ADA, please. I wish I was joking. The Chamber of Commerce and its associated lobbyists have been brutal opponents of making commercial spaces accessible. Not long ago Dominos Pizza argued they didn’t have to make their website accessible to the blind. Not today. Not tomorrow. Perhaps some day. Dominos lost their case in court. They spent more fighting the blind and the ADA then it would have cost them to make a stinking website and app blind friendly. Their position was driven by raw ableism.

So the ADA says “maybe tomorrow’ has been retired.

Like racism, ableism depends on its ugly status quo. The ableist says, “I liked it when the disabled people knew their places.”

I know all the problems with the ADA. But it retired “maybe tomorrow” even though our opponents still wave it around like a discredited flag.

Thirty for Thirty on the ADA: “Essay Seven: It’s Life Itself”

As we near the thirtieth anniversary of the Americans with Disabilities Act I’ve decided to post thirty short essays about the law, the anniversary, and the cultural impact of #ADA @30. I’m doing this as a disabled person who’s lived half his life before the ADA. I’m reflecting on the “before and after” of the law.

Essay Seven: “It’s Life Itself”

Disability life is life. It’s not a secondary or sub-sectioned existence. It is life. It’s life the way life is, on a day when you see the wild geese heading south and north at the same time. It’s life knowing music is cultivated time and knowing time heals nothing.

It’s that day long ago when I went to the typewriter repairman in Helsinki. I was blind and he was deaf. We communicated without social workers. It’s life.

And it’s walking in slow circles around an unfamiliar town just to get a map in your head and why not?

The disabled know what life is because they’re living it unmediated.
The disabled are not soft.
When they hold rulers they know what they can’t measure.
They know about scaring the able bodied always and not just on Halloween.
They piss off the righteous and politically narrow for they require straws.
Scarecrows love us for we give them something to look up to.
It’s life you able bodied narcissuses look up from your ponds.
It’s life with its dropped eggs and dirty windows.
It’s the side-eyed glances of children who can’t decide if cripples are cool.
Here it comes.

This is the ADA @ 30. Real life. Brought to you by an awakening.


In 1972 I took it into my head to end my life. It was easy: suicide was in the air. Today when people talk about the idealized late sixties and early seventies age of activism and protest, the “summer of love” or other trappings of youth culture they generally do so by way of nostalgia. But those were hard days and in my case daily life as a blind teen was becoming so difficult, in fact so preposterous, all I could do was self-medicate and starve.

No doctor or psychologist succeeded in diagnosing me. Anorexia was not widely understood in those days, and it was, in any case, thought to be a condition affecting girls.

They put meat on a string down my throat and took notes. I knew the obstreperous orderlies were Nazis. Knew the doctors were simpletons—knew the word itself described the children of simple people. I was 17 and in love with death and by Christ I wanted anyone who came in contact to see I was in love with it.

I loved Mick Jagger and John Lennon. Both were on heroin. Looking like you were at death’s door meant commercial success. Maybe if I looked that way someone would like me.

The gullible sad boy inside me was desperate for friends.

All that boy knew for sure was the adults were addled on booze and Nixon; the high school was a pipeline to prison; most of his teen acquaintances were cruel.

The gullible boy hadn’t read Kafka’s “Hunger Artist”. Hadn’t read Donald Justice’s poem “The Thin Man”:

I indulge myself
In rich refusals.
Nothing suffices.

I hone myself to
This edge. Asleep, I
Am a horizon.

When my “edge” became 98 pounds I started dreaming of life outside the body, dreams filled with clouds and snow. If there were people in my dreams I don’t remember them. Horizon dreams require no people—that’s one thing I learned from the unconscious in that bad year.

But awake I was easily deceived. I thought rock stars were tutelary angels. I imagined there were people in the world who would reach out to me, hold me close, cry out for my sake.

There were no such people.

My parents left me in the hospital, then drove home to drink whiskey.

The man in the bed next to mine spoke no English. He was from eastern Europe. He staggered from his bed, raised his gown, and proudly showed me his abdominal scar.

I remember thinking he’d achieved something.

One night I unplugged myself from the bed and wandered the halls of the hospital.

Strange to think a blind kid could walk the wards unnoticed but such things happen.

I heard weeping from many different rooms.

I heard nurses laughing from a stairwell where they’d gone to smoke.

My teenaged looted brain believed all sorrows were confirmatory.

Perhaps because I survived this period of my life the above awareness is why I hate Salinger’s Catcher in the Rye. Holden Caulfield is a liar. Anyone is a liar who thinks all sorrows are confirmatory. Or not a liar, but something more sinister, a projective delusionist.

Every day I meet my teen self. He’s still starving. I let him in.

Now the mystery is this: how did I get out of the Mick-Jagger delusional self-erasing, culturally confirmatory art of dying?

The psyche ain’t Hollywood. There was no single incident of transformation. And yet there was something “close” to that—a high school acquaintance had given me a book of poems by the poet Kenneth Rexroth. One day, holding the book an inch from my one “reading eye”—the eye I could use for close examination, though not for long, I read the poem “For Eli Jacobson” and began the tangled, slow, confused journey that all free thinkers must begin—that trip through the hard politics of our age, remembering the good souls who have come before, and yes, pledging our own merits, our own resolve to not give up. Here is Rexroth’s poem:


December 1952

There are few of us now, soon
There will be none. We were comrades
Together, we believed we
Would see with our own eyes the new
World where man was no longer
Wolf to man, but men and women
Were all brothers and lovers
Together. We will not see it.
We will not see it, none of us.
It is farther off than we thought.
In our young days we believed
That as we grew old and fell
Out of rank, new recruits, young
And with the wisdom of youth,
Would take our places and they
Surely would grow old in the
Golden Age. They have not come.
They will not come. There are not
Many of us left. Once we
Marched in closed ranks, today each
Of us fights off the enemy,
A lonely isolated guerrilla.
All this has happened before,
Many times. It does not matter.
We were comrades together.
Life was good for us. It is
Good to be brave — nothing is
Better. Food tastes better. Wine
Is more brilliant. Girls are more
Beautiful. The sky is bluer
For the brave — for the brave and
Happy comrades and for the
Lonely brave retreating warriors.
You had a good life. Even all
Its sorrows and defeats and
Disillusionments were good,
Met with courage and a gay heart.
You are gone and we are that
Much more alone. We are one fewer,
Soon we shall be none. We know now
We have failed for a long time.
And we do not care. We few will
Remember as long as we can,
Our children may remember,
Some day the world will remember.
Then they will say, “They lived in
The days of the good comrades.
It must have been wonderful
To have been alive then, though it
Is very beautiful now.”
We will be remembered, all
Of us, always, by all men,
In the good days now so far away.
If the good days never come,
We will not know. We will not care.
Our lives were the best. We were the
Happiest men alive in our day.

For some, a minute comes when customary thought is broken up. The breaking can be like kindling or burglary—either way it promises a coming time. At 17 I hadn’t read much poetry. I’d read George Orwell plenty and accordingly I could guess at some of Rexroth’s footprints.

I had to read beneath an electric blanket set on the highest number. My ribs were clear, my skin translucent. I was a lonely isolated guerrilla. I didn’t yet know I was fighting for disability rights. Had no idea I would some day live in the days of the “good comrades”—my friends in the disability movement—too many to name here. But how lucky I am to know them. To know even our defeats and disillusionments are good because we can envision the inclusive world of dignity and peace.

Well I don’t know. How can you tell others, how can any of us tell others, we were lifted by things as small and true as elegies? That in our despair we saw, somehow, against all the odds the sky is bluer for the brave?

In the good days now so far away we will have worldwide disability rights.

We will not starve for lack of of knowing our lives were the best.


The ADA @ 30….

We are not experiments.
We’re not failed fashion statements.
We’re not fake characters in lousy novels. (“All the Light We Cannot See”)
We don’t need permission to vote, work, love, live.

The ADA @ 30…

We do need health care, jobs, inclusive higher education…

For we are life itself.
Not ideas about it.