ADA@30 – Planet of the Blind

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: “Outside the Box”

Thirty for Thirty on the ADA

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 Five: “Outside the Box”

If you love something, love it well even as you know its faults. I love the ADA but I also know its wishy washy like an uncle who ignores bigotry right in front of the kids because it’s a hard life.
I know you know what I mean. The ADA hasn’t exactly delivered on jobs for the disabled though it’s not really the old fella’s fault and tomorrow’s another day.

While we don’t really know how many disabled people remain unemployed a generally accepted statistic holds that the figure is around 70%. Now you might ask “70 % of what?” and then you might be surprised to learn that no one knows how many people with disabilities there are in the United States. We have to estimate. The estimate says the number is one in five Americans. The estimation game goes on: we judge two thirds of this phantasmal number are people over 65. Remember, we don’t know this. We’re guessing. I first learned about the imprecision statistic business when I tried to find out how many blind people there are in the US. The number is fungible, inexact, made up. Census takers went door to door in Baltimore and asked people if they could read a standard newspaper. From this a number was hatched. In turn that guess became a national model. Voila. There were one million blind people in the United States. Two thirds were over 65. Believe it or not these numbers are still often cited. They come from the old game: “how many fingers am I holding up?”

With a tip of the hat to Arthur James Balfour there are three kinds of falsehoods: “lies, damned lies, and statistics.” But there’s a fourth: the guesstimate. Now before you imagine I’m going to argue for a national database of the disabled let me be clear that disability is your own business and laws protecting privacy are essential in a free society. In other words, not knowing how many disabled people there are is not a bad thing. And yet, thirty years after the ADA it’s still the case that the disabled are horribly underrepresented in the work force. The ADA has not solved the fear among employers that greets every disabled job seeker.

As the old saying goes: “you can’t legislate morality.” Certainly getting people to do the right thing when they’re afraid is daunting. In her 2017 article on the obstacles to disability employment Megan Purdy wrote about the fact that disabled job applicants seldom get interviews:

“Hiring managers and HR pros worry that candidates with disabilities might burden the company in some way, or just make them and their colleagues uncomfortable. “There’s a lot of discomfort with people with disabilities. I think Oh, geez, someone with a spinal cord injury, I’m not sure they’re going to fit in here.””

She continues:

“In short, the lower response rate observed for candidates with disabilities is due to ignorance and prejudice. These are not challenges candidates can simply overcome with a great resume or interview, they’re bone deep and systematic biases that aren’t quickly eliminated by good data or better training. They’re driven by the sense that employing people with disabilities is somehow more difficult and costly than employing people without disabilities, and even more fundamentally, that people with disabilities are a burden.”

(Here I must interpolate: we don’t have good data and we certainly don’t have good HR training.)

The ADA opened the door for employment by introducing the concept of “reasonable accommodations” and the truth is that most disability related accommodations are inexpensive. Still, rationality doesn’t triumph over able bodied people’s fears about disablement. What if it’s catching? What if that wheelchair person needs me to help him with the bathroom? What if sign language is something I’ll have to learn? I’m afraid of blind people. I’m really uncomfortable with deaf people. Autism is just too hard for me to think about. I know we should have accessible websites but it’s too difficult to think about right now. (A common thing at universities.)

The ADA can’t erase stigma. No civil rights law can do this.

It can only say that discrimination is illegal.

Employers who are afraid of disability all say the same thing: “I’m sorry, we just filled that job.”

Back to Megan Purdy:

“PBS interviewed leaders at accounting firm EY, who are working to dramatically increase the number of people on the autism spectrum. While executives could cite logical reasons for the program – the unique skills that neurodiverse people brought to the team and the boost they provide to the company’s bottom line – their respect for their employees and belief in the program was also clear. They believe in their hiring plan and they value the contributions of all their employees. They have taken the time to do diversity training, not so they can check off that box, so that they can be better managers of people with disabilities. They bought in, understanding the problem, working to root out bias in their company culture, and diversifying their workforce.”

This is the advantage of the ADA: diversity includes disability and America, slowly, ever so slowly is learning how the disabled contribute in positive ways to the workforce. As a friend of mine, a blind attorney once said in an employment interview: “dude, my whole life is outside the box!”

Thirty for Thirty on the ADA: Essay Four “Among”

What do we mean when we say “thirty years since the ADA?” I think as disabled people we’re talking about a living document and not an artifact. There are three ways in which the Americans with Disabilities Act is not static and therefore keeps up with the times. One: it’s protections for people who lack the capacity to see, hear, walk, stand, speak, engage in normative modes of thinking (a phrase I detest) or who have invisible disablements (HIV, cancer, auto-immune conditions) are inclusive. AIDS patients were and are protected by the ADA though when the law was passed no one could have imagined this. Number one is connected to number two: disabilities are complex, often unforeseeable. The law makes room for this. Three: opponents may not like this, but the ADA says equal access means equal access and the law is strong enough to make it stick despite fierce and consistent objections from business groups, universities and corporations that have cried foul from the day President George H. W. Bush signed the bill into law. At thirty we can say the ADA is still very much alive and living with us. That’s the thing about civil rights laws: they have to be tough and equally imaginative. Diverse societies depend on imagination. Daily we see racist, homophobic, ableist, misogynistic, xenophobic people assert that critical thinking is for losers. This proves to be untrue in a nation of well written laws.

This leads to the sad truth that laws are not always enforced and can be subverted especially in provincial places. I recall in particular the ugly story of a blind woman in Iowa who was prevented from bringing her guide dog to a computer class “for” the blind. She filed suit in a local court which in turn saw no problem with the discrimination. I think of my late friend Bill Peace who was denied proper medical care at Yale University Hospital while attending a conference on disability. He had a heart attack. Because he was a wheel chair user they put him in a dark corner of the emergency room and left him alone for hours. I think you see where I’m headed: sectoral and isolated places still believe even thirty years after the ADA that it’s still 1910. I pick that date almost at random but it serves the purpose: the disabled were imagined to be fit only for the family’s tool shed or the asylum. In either case they were ignored. The ADA says we cannot be ignored. Plenty of people who do not currently have a disability think that having one is a monumental tragedy. When TV programs like “Dateline”feature a blind person they often say: “He was “Struck down” by blindness.” This old Victorian language still haunts every person with a disability.In his wonderful memoir “Moving Violations” John Hockenberry describes an encounter he once had with an airline hostess who, seeing that he used a wheelchair, opined that if she was in his shoes she’d probably have to kill herself. All people with disabilities can share stories like Hockenberry’s.

The ADA says our lives are worth living. Are disability lives not worth living? The long history of “abled” voices has said, and continues to say “no”–a “no” that has been complicated by pre-natal testing and divisive political rhetoric about the nature of what a qualified life really is. In 2005 the Terri Schiavo case demonstrated to disability rights activists that when it comes to protecting disability life, conservatives had more empathy and courage than neo-liberal Democrats (with the notable exception of the Rev. Jesse Jackson). The very idea that a disabled life is not a life at all depends both on the medical appropriation of curative utility (life with illness only possesses value in relation to its amelioration) and simple metaphor (disability understood as a ruined identity, see Erving Goffman). The dichotomies of spoiled identity have a long history on both sides of the Atlantic–eugenics, forced sterilizations, the “ugly laws”, institutionalization, and the Nazi “T4” mass murder of adults and children with disabilities. The pattern is one of distillation: disability, (post industrial revolution) is broadly conceived–has been conceived as economically unviable, hence lacking all capacity for the pursuit of happiness in the world of economic-biography.

The darker version of this is the resentment of social welfare (Hitler famously depicted people with disabilities as “useless eaters”). The utilitarian (Benthamite) position (Peter Singer) holds that the greater good of society must trump the needs of a minority in pain–”good” is understood as the potential for achieving pleasure. The Benthamite pleasure principle subborns life to economic life and forgoes the question of what constitutes individual autonomy when imagined outside of industrial labor. In turn it’s the right of the majority class, the “duty” of the majority class to debate the probable happiness potential and index of the minority. Many disability rights activists and scholars have pointed out the inevitable connection of Jeremy Bentham’s ideas (and Singer’s fealty to same) as the foundational principles of Nazism. There is truth to this because eugenics was driven by the principles of Bentham.)

The 21st century extension of disability as a cathexis of the utilitarian body and the medical model of physicality (that abnormality only has value in relation to its likelihood of cure) is now intensified by pre-natal testing. Mr. Singer would counsel parents to abort a fetus if its future birth would result in a child without arms and legs. In his view that child would have no likelihood of happiness and (more sinister of course) such a child would impede the greater happiness of society. Singer is no scholar of economies of scale or of their pre-history. The idea that a legless man might be a great singer or poet demands an appreciation of proto-industrial village life: the majority history of human kind. But enough of Singer.

A friend wrote me recently. She’s a young writer and a new mother of a little girl with a disability. She wrote because she’s experienced the insensitivity of her academic colleagues and friends who have opined that they couldn’t imagine raising a child with an intellectual or developmental disability. My friend has been shocked by the thuggish candor of these remarks. And by turn of the imaginative poverty of the conceptualization of a challenged life as no life at all. This is the marriage of utilitarian philosophy (absorbed through capitalism’s ubiquitous social rhetoric) and the medical model of disability which holds that physical difference without the prospect of cure is not worth enduring. We are living in creepy and reactionary times. And though I’ve been a life long liberal, I applauded the efforts of former Florida governor Jeb Bush to save the unimaginable life of Terri Schiavo. I’ve never felt any ambiguity about that. Perhaps my lifetime of nearly incomprehensible difficulty to live and stand among the able bodied has given me a strange capacity for steepened joy. Not an easy joy. Not a hot rod, drive your car fast joy, It’s the joy of living beautifully in the solitudes of challenge–something your average doctor or utilitarian philosopher can’t imagine because they don’t understand the vitality of pain.

So clearly part of our job is to help those who work in the public sphere and who have no experience of disability understand the vitality of lives that are lived in what I’m calling “the vitality of pain” because the phrase reflects rather accurately what all life is.

Another part of our job is to make strong connections with groups and organizations that are leveraging the legislated rights of people with disabilities by insisting that states and municipalities live up to the Americans with Disabilities Act. The New Hampshire story above and recent developments in New York State offer some examples but there are more.

The Justice Department’s recent comprehensive settlement agreement with the Commonwealth of Virginia resolved problems in the state’s system for serving people with developmental disabilities, including intellectual disabilities, and further resolved violations of the Americans with Disabilities Act (ADA).

Under the ADA and the Supreme Court’s landmark decision in Olmstead v. L.C., individuals with disabilities have the right to receive services in the most integrated settings appropriate to their needs. The ADA and Olmstead require states to provide people with disabilities the opportunity to live and receive services in the community instead of in institutions.

It’s clear that with sufficient stamina, persistence, and networking we can fight for the rights of people with disabilities. It is right to remember the words of Jim Ferris, a poet who often writes about disability from the experience of having a disability. He says: We are not signs,/we do not live in spite of/or because of facts,/we live with them,/ around them,/among

Among. If you are looking for a one word slogan that’s it. The ADA @30 is Among.

Thirty for Thirty on the ADA: Essay Three “Lyric Life”

Thirty for Thirty on the ADA

Essay 3: Lyric Life

I was on a playground in Durham, New Hampshire. The year was 1960 and I was five years old. I had thick glasses and was smaller than my classmates. A big kid who I’ll call Rollie, who daily taunted me and called me “Blindo” approached me with a handful of dirt which he clearly meant for me to eat.

“You will eat this,” he said.

“It looks good,” I said. “Hey Rollie, have you ever eaten an acorn?”

Rollie held his dirt before him like a little pillow.

“An acorn?” he said.

“Yeah, they’re just like peanuts, really good, that’s why squirrels like them. You want one?”

“Sure,” he said. He held out his other hand and I dropped a neatly shelled acorn into his palm.

“Go on Rollie, its yummy!”

Rollie ate it. Then he turned red, and I mean red, not beet red or fire engine red—he was red as an unkind boy with his mouth swollen shut. Acorns are among the bitterest things on earth. And of course I only knew this because I’d tried one. I was a solitary kid. Spent a lot of time in the woods. Those were the days when a boy could still go to the woods.

Rollie was incapacitated. I don’t think he ever bothered me after that.

I still recall the thrill of my discovery. That language could render an enemy harmless was rousing.

I didn’t do a little dance. Didn’t brag about the matter. But I was on the way.

A lyric life, I think, is one wherein you can access feelings and then, by turn do something productive with them.

The simplest definition of a lyric poem is a poem that expresses the writer’s feelings.
Freud said: “Life as we find it is too hard for us; it entails too much pain, too many disappointments, impossible tasks. We cannot do without palliative remedies.”

One of those palliative remedies is lyric itself. One may think of this as causative intuition, a feeling that trips a switch and makes you sing when you should properly be weeping or running for your life. Again Freud: “Man should not strive to eliminate his complexes, but to get in accord with them; they are legitimately what directs his contact in the world.”

We are getting in accord. We are beside a country road picking edible flowers in the cool of the day. We do not pick edible flowers beside highways because there are pesticides in trafficked areas.

We remove the pistils and stamens before eating.

“Hey Rollie have you ever eaten Milkweed?”

“Rollie, you can trust me this time. It tastes like green beans.”

You will laugh at me, but I think of the ADA as green beans….

I think of it as the dictionary for disability assertion.

Now bullies ye will always have with ye. Of course.

Today’s disabled kids must also endure bullies.

Even now as a grownup I still endure them.

Not long ago I was called an “ignoramus” by a fellow faculty member at Syracuse University where I teach and run a program devoted to disability research. It is never appropriate to call anyone an ignoramus in an educational setting for the term’s antonym s are “brain “ and “genius” and its synonyms include: airhead, birdbrain, blockhead, bonehead, bubblehead, chowderhead, chucklehead, clodpoll (or clodpole), clot [British], cluck, clunk, cretin, cuddy (or cuddie) [British dialect], deadhead, dim bulb [slang], dimwit, dip, dodo, dolt, donkey, doofus [slang], dope, dork [slang], dullard, dum-dum, dumbbell, dumbhead, dummkopf, dummy, dunce, dunderhead, fathead, gander, golem, goof, goon, half-wit, hammerhead, hardhead, idiot, imbecile, jackass, know-nothing, knucklehead, lamebrain, loggerhead [chiefly dialect], loon, lump, lunkhead, meathead, mome [archaic], moron, mug [chiefly British], mutt, natural, nimrod [slang], nincompoop, ninny, ninnyhammer, nit [chiefly British], nitwit, noddy, noodle, numskull (or numbskull), oaf, pinhead, prat [British], ratbag [chiefly Australian], saphead, schlub (also shlub) [slang], schnook [slang], simpleton, stock, stupe, stupid, thickhead, turkey, woodenhead, yahoo, yo-yo…

As a disabled person I know full well what the delegitimizing effects of language can do to anyone who hails from a historically marginalized background but where disability is concerned the labeling I’ve described has a particularly specious and ugly history. Idiot, moron, half-wit, dolt, cretin are all familiar to the disabled. One would expect relief from these terms at a university. What’s particularly galling is that the subject I was discussing with the professor in question was ableism—namely that I’d said hello to him on an elevator, I, a blind man with a white cane, and he simply stared at me. No acknowledgement. When two students got on the elevator he lit up and talked breezily about how he hates snow. I followed him to his office and said that by not acknowledging a blind person he creates a social dynamic that feels off-putting and I wanted to discuss the matter. He became instantly contemptuous.

Now of course that’s because of the synonyms above. In this man’s antediluvian world view the disabled really shouldn’t be in the academy. Ableism is not only more pervasive than people generally understand its also more consistent at universities than is commonly recognized.

As for me, I’m an ignorant man to professor “p” for that’s what I’m calling him. “P” for privileged.

He doesn’t know it yet, but incapacities likely await him.

The good news is that when and if he’s discriminated against should that eventuality arise the ADA will likely protect him.

Thirty for Thirty on the ADA: “Coming out of the Dark”

Thirty for Thirty on the ADA

Essay 2: “Coming out of the Dark”

“Get out of your comfort zone.” “Think outside the box.” You’ve heard the phrases. Disabled people are ironic counterpoints to both of these sayings—we’re not in the comfort zone and we don’t have to be told to think imaginatively—all our rendezvous with “normal” require fresh thinking.

The ADA was signed in the year of Billy Joel’s “We Didn’t Start the Fire” and if you’re a fan of cognitive dissonance you’ll recall the disabled “did” start the fire—Viet Nam veterans, advocates for the mentally ill, Baby Boom cripples who wanted lives and careers from main street to Wall Street—these men and women started a fire with their identification papers. They also crawled up the steps of the US Capitol, disrupted political conventions, and occupied hundreds of hostile public spaces.

This thirty year old landmark civil rights law didn’t happen overnight. You can read about the groundbreaking work to launch the ADA in Enabling Acts by Lennard Davis. He tells how pioneering disability activists like Judy Heumann, Ed Roberts, Pat Wright, Bob Funk, Arlene Mayerson, Mary Lou Breslin made the difficult journey from California to Washington DC in 1980. The back story of the ADA is remarkable for its grass roots, its sophisticated, its doggedness, its faith and tireless optimism.

The fuel for the fire was pure, unadulterated inaccessibility. If you were a wheelchair user you couldn’t take public transportation, couldn’t get into civic offices, businesses, take a taxicab; if you were blind you could get a guide dog or a stick but you had no rights to education. If you were mentally ill or neuro-divergent you could count on being a shut in or a patient in a ward. If you were born after the ADA you might not know how bad it was unless you’ve taken a disability history course. It was bad.

While Judy Heumann and so many others were descending on Washington I was in Iowa City, blind, trying to get a grad degree and finding the university was hostile to the disabled. I didn’t have disability pals. I internalized the disdain of others and suffered. I was abject.

The only thing I knew how to do in 1980 was dream. Dreaming is good. But there were fighters out there in the bigger world who were and remain my allies though I didn’t know about them back then.

In 1980 I didn’t have the knowledge as a blind person about how to travel safely.

My memoir Have Dog, Will Travel: A Poet’s Journey in part relives that era:

I’d worked all my life—had actually choreographed it—so I could travel to small and secure places without a white stick. I’d attended college at Hobart and William Smith in Geneva, New York, where my father was the president. I knew every inch of the campus. I learned in a private, ill-favored way how to walk mnemonically. It was eight steps down from the English Department to the sidewalk; seventeen steps to a funny break in that same sidewalk which somehow never got repaired; thirty steps between the post office entrance and my mailbox. I wandered by rote. At a school with only 1,600 students I could pretend to see. When I couldn’t manage it, I’d say I had vision problems. Anything sounded better than blindness. I had “vision issues.” I needed extra time to complete reading assignments. One of my eyes drifted. But still, seeing me move with intention from place to place, many friends and faculty had no idea how all encompassing my charade really was.

When I decided to attend graduate school at the University of Iowa’s Writers’ Workshop I flew to Iowa City three months early and walked the town like a crime-scene investigator. I walked in little grids. I moved haltingly up and down dozens of streets. When I thought no one was watching I drew a telescope from my pocket and read the street signs. I hiked in the stifling summer heat and worried about people marking me as deviant.

Far away from Iowa smart activists were challenging everything I was struggling with. Disability would no longer be deviant.

Today I teach at Syracuse University and work on interdisciplinary disability teaching and research in the Burton Blatt Institute.

Burton Blatt was also a pioneer of disability rights. The BBI website notes he was “an advocate of deinstitutionalization, and he helped initiate community living programs and family support services. In his clinical work he emphasized the provision of education to children with severe disabilities, those whom he called “clinically homeless.” As a national leader in special education, he called for programs to integrate students with disabilities into public schools and worked to promote a more open society for them.”

Thirty years after the ADA was signed that work continues. Inclusion means opening the doors for non-speaking people, making certain the clinically homeless are part of the community, standing for accessible design, pushing for self determination, fighting for ecological justice, black disabled lives, inclusive education—and this is only a partial list.

Another great song from 1990 was Gloria Estefan’s “Coming Out of the Dark.” Perfect.

ABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger