Year: 2014

When the police came to the big house on Pleasant Street they brought pillows. The squad cars were filled with feather pillows. It looked like they’d raided an orphanage. It was my first experience of quotidian surrealism—cops with pillows and wooden boxes and their faces tight with concern; small town officers preparing to face death, for the house before them was really stuffed to the gills with dynamite and it was crotchety dynamite, old, rascally vicious TNT and the truth was, it could blow at any minute and everyone could die. Somehow what with familiarity—because she’d lived with the dynamite for such a long time—my grandmother thought the sight of cops with pillows was ridiculous—though she didn’t say so. She told us later, that seeing cops gently laying stick after stick of dynamite in pillowed boxes was laughable, and better yet, their tippy toed, hunched parade up the basement stairs, each man holding his breath, was risibly tight, so much so she’d had to run away and pee.

 

It took the cops eight hours to remove the TNT.

 

“Somehow I never thought the stuff would explode,” my grandmother said. “But the cops’ fear,” she said, “that was priceless.”

 

When I was a boy I thought my grandmother’s nitro-glycerine tablets were amusing. Certainly at any moment my grandmother might explode. The fantasy (for that’s what it was) had more possibilities than those offered by mere prescription for she lived in a Victorian house filled with dynamite, a matter at once improbable and wickedly dangerous. About twice a year she’d go to the Laconia, New Hampshire Police Department and remind the good officers she had roughly 200 crates of TNT in her cellar, and twice a year the policemen patronized her with “yes, yes,” and “dear, dear” and “there, there” and that would be the end of it. But then the day came when she brought a box of decaying dynamite sticks into the station and plunked it down on the desk and said, “W.T. loved dynamite, and he left me a house crammed with the stuff, and he’s been gone a long time, Christ, for all I know he’s in Dynamiter’s Heaven. But dynamite decays Godammit, and the whole house is going to blow the next time somebody rings the doorbell!”

 

It was the doorbell that got their attention.

 

And so we sat around for a week, my grandmother popping nitro pills and smoking Kent cigarettes, the house creaking as it always did, the boxes of dynamite still as taxidermic bison, and the police nowhere in sight.

 

May 20, 2014     RESOUNDING VICTORY FOR ALL LAW SCHOOL APPLICANTS WITH DISABILITIES:    Settlement in Disability Discrimination Case Against LSAC       Today’s settlement in The Department of Fair Employment and Housing v. Law School Admission Council, Inc. case is a resounding victory for all individuals with disabilities who seek a level playing field on which to qualify for entrance into the legal profession.   I thank the U.S. Department of Justice, the California Department of Fair Employment and Housing (DFEH) and my colleagues at the Legal Aid Society-Employment Law Center for their principled and vigorous leadership. I especially applaud the courageous individuals who came forward to stand up for their rights. Their victory was hard fought. For them today’s announcement is sweet indeed.     I am gratified that the settlement agreement is structured to bring a sorely needed measure of fairness to prospective law students. The Law School Admission Council (LSAC) has long required burdensome documentation from individuals with disabilities before allowing them the testing accommodations on the Law School Admission Test (LSAT) to which they are entitled under federal and state laws. The LSAC’s approach erected illegal barriers and led to their scattered, ad hoc decision-making that was inconsistent with the medical reports and recommendations of the test takers’ healthcare providers. And to make matters worse, even if one were lucky enough to secure accommodations, the LSAC’s policy was to report that individual’s LSAT score with a scarlet letter – a score notation that not only illegally disclosed to law schools that the applicant had a disability but that also asserted that the score was less valid. This practice led many students who were fearful of its stigmatizing effect to forego seeking their rights.   Today, the LSAC’s discriminatory policy of flagging LSAT scores will no longer have a chilling effect on law school applicants with disabilities. Now they can seek the accommodations to which they are legally entitled without fear that their disability status will be disclosed to prospective law schools.

 

I’ve just returned home from the University of Iowa (where I used to teach) and where I saw my stepdaughter Tara Connell graduate with her master’s from their “Speech Pathology” program. Tara’s intention is to work with autist kids and I couldn’t be prouder of her. She’s worked tirelessly to achieve a goal—a noble pursuit—for she wants to make the lives of others better. I’m not certain this moral commitment can be taught though certainly much else can. And so, sitting in the vast basketball arena at Iowa I reflected on how Tara has grown; how she’s gracefully absorbed the examples of the many adults in her life who’ve devoted their careers to helping people with disabilities. (Her mom was for many years a guide dog trainer, as was her father.) 

Tara’s accomplishment can’t be diminished by architectures and deleterious administrations. But if you were a person with a disability at Iowa’s commencement and you desired a seat, perhaps with your family, you were out of luck. One of the reasons I left the U of Iowa was the institutions general and ubiquitous unconcern for people with disabilities. The disability seating in the “Carver Hawkeye Arena” is pre-ADA seating, at the top of the stadium; so far from the action you might as well stay home. 

While I was in Iowa I checked Facebook and saw my friend Bill Peace was attending his son’s graduation from Hofstra. Bill is a wheelchair user—nay, an athlete on wheels, but nevertheless, his seating for Hofstra’s commencement was every bit as disgraceful as Iowa’s arrangement. 

Now this isn’t a scientific sampling. Two parents with disabilities, two campuses, but ask yourself about academic culture and disability. Iowa’s student services office for disabilities is located in the basement of a dormitory where people with wheelchairs can’t in fact “get out” if there’s a power failure. The architectural and administrative message couldn’t be clearer: disability is a ghetto; its marginalized; its not important for the able bodied general administrative population to think about. Iowa’s commencement platform was up high, with two sets of stairs. No effort was made to make the event accessible should there have been a wheelchair user in the ceremony. (Of course they’d have “come down” from the platform and handed a diploma to the wheelchair student, if they’d been asked.) Meanwhile, the graduate dean at Iowa spoke moistly about how important veterans are to the university. One wonders what kind of veterans he imagines. 

Disability is part of everything, not a sub-rosa category of citizenship. But you wouldn’t know it if you’d visited Iowa or Hofstra this past weekend. Shame on these two schools. 

Back to Tara. Despite the abeyance and distillations of disability evident, sometimes even in her own curriculum, she believes autists’ lives can be marvelous. She sees promise. She presumes competence. Nothing could be finer. And nothing is more important as a cultural motto. Like the golden rule it works for everyone. 

 

    

 

Hello. I am a guide dog. My name is Nira. I read Walt Whitman in secret. I especially love these lines: 

 

Why, who makes much of a miracle?

As to me I know nothing else but miracles,

Whether I walk the streets of Manhattan,

Or dart my sight over the roofs of houses toward the sky,

Or wade with naked feet along the beach just in the edge of the water,

Or stand under trees in the woods…

 

All dogs read Walt Whitman. We agree with the “good gray poet” that:

Every cubic inch of space is a miracle, 

Every square yard of the surface of the earth is spread with the same…

 

I’m a guide dog. I cherish lives. I even save a few. 

 

 

Dear Dorothy Parker, you are such a pest. Flamingos often are. Especially the solo ones. 

 

Dear Pierre Reverdy, don’t you have any real friends?

 

That was a mercurial zeitgeist alright. It made people hot or tender. 

 

**

 

Some say we can’t have the world and justice at the same time. I don’t agree. People who think so have never saved a dog or a child. 

 

**

 

Beware of people who have never saved a dog or a child. 

 

**

 

“Eat the round ones first,” (my grandfather’s last words.)

 

**

 

“Of course I talk to myself. I like a good speaker, and I appreciate an intelligent audience.” (Dorothy Parker)

 

**

 

“[poems are] crystals deposited after the effervescent contact of the spirit with reality.” (Pierre Reverdy)

 

**

 

Opportunity is an intriguing word because it rises above fact to become an invitation.

 

**

 

Dorothy Parker said she’d be happy with a diamond studded wheelchair. Now that’s capitalism. 

 

**

 

Pierre Reverdy: “God exists only if adored.”

 

I belong to a fellowship of lonesome people. Perhaps you do too. Or maybe not. Your life may be “included” in the best sense. Maybe you’ve been a valued member of a team; been invited to a prom; gone sailing with a crew. I hereby admit my jealousy. But not for the reason you might think. My envy, such as it is, comes from knowing mainstreamed lives are the products of foundation. 

 

The underpinning or “base” I’m referring to results from autonomy. Its a Greek word. It refers to the capacity of a rational individual to make informed, un-coerced decisions. People who grow up in fear don’t necessarily develop such capacities. Loneliness is a byproduct of fear. I don’t know how to be among you, it says. If I’m lucky enough to be among you, I must hide who I am.

 

This is the land of Oprah Winfrey. Everyone says I’m lonely, I’m misunderstood, and look at me! I’m making bad decisions!  

 

People should be saying instead, look at me! I have no foundation!  No autonomy! 

 

Autonomy deficiency is the biggest problem faced by people with disabilities. We don’t talk about it enough. Instead we say “self-advocacy” —as in Joey needs to learn how to be a self-advocate. Older people with disabilities (those who grew up before the ADA) are especially fond of this. 

 

You can’t be a self-advocate, or a member of a community, or even a decent dog owner, without having achieved the capacity to make informed and healthy decisions. 

 

I’ll always be lonesome because my childhood was lonely. Now as an adult I have to say “so be it.” But I make good decisions most days; I’m not a victim; I’m aware of, even covetous of progress—especially where human rights are concerned.   

 

Oprah thinks bad decisions come from the inability to tell the truth. In Oprah’s world view, everyone is asleep like Snow White—and then, the truth-kiss is delivered and “voila” people are raised up from victimhood. This is, as the Brits would say, “bollocks.” In Oprah’s world view, no one has an Id. 

 

Now everyone loves autonomy: religious zealots, ideologues, business men, politicians, generals and admirals—all wave the autonomy flag. This is because “informed” (for them) means willing. In turn they get to decide what’s healthy for you. 

 

Real autonomy doesn’t require an Ivy League education. You don’t need to be rich. You don’t have to believe in God. 

 

Underneath all the floors of your house; deep in your psyche; in the basement where the bones lay strewn; back when you were originally “you” did you want to nurture others? 

 

That’s the foundation. Did you wish to feed others? And if you were lonesome from the dawn, did you serve a purpose?

 

     

 

 

 

Peace goes into the making of a poem as flour goes into the making of bread.

 

—Pablo Neruda

 

 

I am making this from my love of an old dog named Roscoe—

who died in our house with our hands on his head

who was loyal and now runs 

in dreams for peace is hope. 

 

I cannot maintain. Still he is with me. 

Peace.  Naive. My love. 

So I have this disability. You do too. Or perhaps some day you will. But just so we’re in agreement: no one’s perfect. (I hope you weren’t feeling perfect. I don’t want to be your buzz kill.) If you are perfect (against all odds) you are unrepeatable, even with genetic counseling.

 

Being physically different is also unrepeatable. No two people with a disability are alike; no two people who have the same type of disability are alike. This matters as each disabled person, each man, woman, and child, represents a unique soul. What is a soul? Its the engine of amazement. Everyone has a sense of wonder. With wonder comes empathy. “What is a friend,” asks Aristotle, “a single soul dwelling in two bodies.” Accordingly the soul is the seat of astonishment and houses our ability to understand and share the feelings of others.

 

I backtrack: no two people with a disability are alike; no two people with the same disability are alike. No two blind people experience blindness the same way. In fact, there’s no such thing as “the blind”—the identifier breaks once you know real people who experience vision loss. There is more than one way to be blind. My pal Leo sees through his own periscope. He is the commander of a private submarine–the USN Leo and though his sighted options are limited, they're still fair. He drives his car in a gated community in Arizona largely because he can still do it. Sometimes he honks his horn. And though he's looking through a tube, the day is glossy and brilliant as old Kodachrome. Leo can tell you that while blindness is not always a preferred experience it's often more interesting than sighted people suppose. For some of us the colors are beyond compare. 

 

Another friend–I'll call her Karen–(not everyone wants to be known for folly) runs through a field in Nebraska though she sees only light. But the light is so gold, so dappled and evanescent that her description makes you want to cry. The average sighted person can learn from her how daylight spins between brown and yellow tonic, the drafts she drinks between the clock and the sun. Just run beside her.

 

Sight is an immoderate thing, never static. It is, perhaps, the dearest sense. The flickering light of a fire, shadows on a hearthstone; the laughing element of sun on water; early morning eastern skies; the cold and steady light at mid ocean–many blind people know these things. Nowadays more blind people see something of the world than is commonly understood. 

 

A phrase I like when thinking about disability is “presume competence”—in fact I like the idea so much I use it when thinking about everyone. Every soul, the engine of amazement. The house of empathy. I first heard the phrase when I came to Syracuse University to teach in SU’s Center on Human Policy, Law, and Disability Studies. 

 

There's a very interesting article from 2011 at US News by Meryl Davids Landau which highlights the work of progressive college admissions deans who are seeing the advantages of disability inclusion on their campuses. Here's a taste: 

"Some 45 college admissions deans from across the country gathered at Stanford University this past June to learn about high-achieving dyslexic applicants. Experts shared the latest research, and well-known figures—including California Lt. Gov. Gavin Newsom, financier Charles Schwab, and Delos "Toby" Cosgrove, a heart surgeon and CEO of the Cleveland Clinic—described their experiences coping with the disability.

"Our goal is to help colleges realize that, because of their intelligence, out-of-the-box thinking, and perseverance, these students can add luster" to their schools, says Sally Shaywitz, the Audrey G. Ratner professor in learning development at Yale University who helped organize the event."

From a disability studies perspective this is a hopeful sign. They key phrase that Professor Shaywitz offers is "to help colleges realize"–for surely, as those of us in dis-studies have long known, neuro-atypical students and colleagues have spent their lives outside the box and thereby bring fresh thinking to the classroom and the work environment each and every day. I would add though, that this is not simply true for high achieving students with dyslexia–it also holds for nonspeaking people with autism, blind students, students with profound poly-trauma. 

A recent special issue of Disability Studies Quarterly devoted to autism and neuro-diversity edited by Ralph and Emily Savarese highlights the remarkable insights and imaginative atypicalities of autists and is critically important reading. I like what Jamie Burke, a Syracuse University alum (and autist) says in an epigraph to the issue:

"I must send forward my bold appreciation for taking the soul of this topic … to be shared among the many and diverse hearts who will attempt a new understanding. It can be very lovely when curious old patterns of comprehension shift to a more connected and true demonstration of the improved focus. My deep thanks, then, for the spirit of change and challenge." 

 “Taking the soul of this topic” is the key. Amazement and empathy. And let’s be bold, when amazement and empathy are at work (as the soul would have it) we also achieve curiosity. 

One of the ways to achieve the curious soul is by imagining yourself in someone else’s body. Every one of us can easily imagine having a different body than the one we currently have. Now as a blind person I walk about, meeting and greeting people who are inexact to me. This is an aid in “seeing” them. But the presumption of competence is also about feeling—the soul insists it can be inside of anything. You could be a man or woman, but you could also be among the trees and beasts. St. Augustine wrote:

“[T]he soul by its presence gives life to this earth- and death-bound body. It makes of it a unified organism and maintains it as such, keeping it from disintegrating and wasting away. It provides for a proper, balanced distribution of nourishment to the body’s members. It preserves the body’s harmony and proportion, not only in beauty, but also in growth and reproduction. Obviously, however, these are faculties which man has in common with the plant world; for we say of plants too, that they live, [and] we see and acknowledge that each of them is preserved to its own generic being, is nourished, grows, and reproduces itself. (Augustine 1950b: Greatness of the Soul, 33.70)”

 

To presume competence is to presume life itself is encoded with harmony and proportion which we are often insufficiently aware of. But to presume competence is also to understand the soul is both simple and complex. Augustine again:

 

“When we come to a spiritual creature such as the soul, it is certainly found to be simple in comparison with the body; but apart from such a comparison it is multiple, not simple. The reason it is simpler than the body is that it has no mass spread out in space, but in any body it is whole in the whole and whole also in any part of the body. Thus when something happens even in some tiny little part that the soul is aware of, the whole soul is aware of it because it does not escape the whole soul even though it does not happen in the whole body. And yet even in the soul it is one thing to be ingenious, another to be unskillful, another to be sharp, another to have good memory; greed is one thing, fear another, joy another, sadness another; some of these things can be found in the soul without others, some more, some less; countless qualities can be found in the soul in countless ways. So it is clear that its nature is not simple but multiple. (On the Trinity, VI.2.8)”

 

When I imagine myself in another’s body I understand their joy, sadness, localized aches, for the soul “contains multitudes” as Walt Whitman said. 

Being physically different in unrepeatable. Soulful. At once simple and yet more complicated than customary thought allows. 

Empathy. Not sorrow. Imagination. Not presumption. 

 

 

 

 

Every day I read something about disability that frightens me out of my wits. I generally have strong wits so this is a serious declaration on my part. There’s the story of Sean Vidal, a North Carolina teen with schizophrenia who was shot to death by police. Or the death of Robert Saylor who had Down Syndrome and died of asphyxiation after being handcuffed and tasered by police. Then there’s the story of Charlie McGillivary, a man with severe brain damage, who couldn’t speak, who was murdered by police in Toronto. More stories of disability murder at the hands of police can be found here. 

 

Then there’s the story of two Maryland teen girls who bullied an autistic boy into performing sexual acts. 

 

“The girls, ages 17 and 15, threatened the teen with a knife, kicked him in the groin and dragged him around by his hair, said St. Mary's County Sheriff's Office Sgt. Cara Grumbels. They coerced him into walking on a partially frozen pond and then refused to help him out of the frigid water, she said.”

 

Or how about this: “Trigger Happy Cop Kills Disabled Man’s Service Dog”

 

Or the story of Kelly Thomas, a homeless man with mental illness, who was beaten into a coma by Fullerton, California police. 

 

These stories are indeed legion. 

 

This is why the Senate’s hearings on disability and law enforcement are critically important. But the issue of disability and law enforcement is more complex than this quote from Senator Durbin would have it:

 

“As local mental health and disability services become increasingly scarce, the burden on police officers to play both law enforcer and social worker will only grow,” Durbin said, adding that Congress and the executive branch need to help local and state law enforcement “develop practices that protect police officers, disabled individuals and the public.”

Notice the de facto assumption that mental health and disability services are scarce and will become ever more scarce according to the Senator. This is what frightens me out of my wits. 

The American people deserve solid mental health services and disability rehabilitation programs. What’s Congress doing instead?

They’re promoting the idea that Social Security Disability programs are largely fraudulent or fighting to prevent the US adoption of the UN Charter on Disability Rights. 

Scared? You bet I’m scared.