Disability, Expectation, and a Just a Whiff of Episcopalianism

“I expect color to be used against me,” writes John Edgar Wideman in the closing story of his latest collection American Histories. “Amen,” I think, early, the sun not up, reading alone with my talking computer. Race is the first they “they” see—the predatory “they” ruthless, short tempered and ubiquitous—good God is it everywhere. And the sun not up, alone, I want to reach through circuits and virtual pages and shake Wideman’s hand.

Each of us does her or his or they own dance with the expectation of disadvantage in advance. If you’re black, or Latinx, or queer, or disabled you are far more likely to live this on a daily basis. Not likely. I take that back. One does. What was I thinking?

I expect disability to be used against me.

Long ago I read a definition of resentment which I can’t attribute or source: resentment is drinking poison and waiting for others to die.

I not only expect but know disability will be used against me so how do I escape the poison-resentment-complex? Or “we”—how do we do it? Black, queer, neurodivergent, women in male dominated professions, in my case blind at a university that has poor support services for the disabled and more than passing hostility?

I don’t like poison. It tastes like wormwood and iodine. Trust me I know what it tastes like.

When I’m home alone, after a day of discriminatory treatment, being told to shut up, etc., I think, as I’m sure Wideman must, “I’m a good guy; I’m funny; I like people, why is this happening to me?”

That’s the effect of the poison. Swallowing it you fall into false consciousness, a false expectation about others. You think they’re supposed to change and you’re dying inside and the ableist, racist, homophobic people go on happily about their business. As Auden says famously in his poem Musee des Beaux Arts—suffering is unnoticed by the privileged. He says it better. Read the poem.

The key to having a good life when you know your difference is going to be used against you, perhaps in a minute, perhaps later this afternoon is mysterious and there are few prescriptions in tablet form or in holy books that are proper anodynes. I love the psalms. I adore Eleanor Roosevelt: “No one can make you feel inferior without your consent.” Shit, I’m an Episcopalian. I have whole passages of the New Testament memorized. I love Christ not for his suffering but his transcendence of it. He’s both the king of those who are mocked and of those who persist in love. But I’ll admit it: most days Jesus is too mystical for me when I’m struggling disabled in a hostile world.

I expect disability to be used against me.

It’s that word “expect” that’s the killer.

Expect is related to spectacles. It comes from Latin “to look out”.

Later it comes to mean imagining things that will happen. Somewhere in the 16th century the word transitioned from “fact” (to see what’s coming) to fiction—one of the pejorative dynamics of imagination, suspecting things will happen because they’ve happened in the past. I often tell creative writing students only ten percent of imagination is worthwhile. That estimation may be generous.

This is the poison of imagination. I expect the next bad thing. Ungoverned this becomes depression. The depressed imagination sees everything in the world as equal and equally bad.

Wideman’s literary character is correct: race will be used against him. Finding love in the face of this is the most difficult challenge of all. We can invent machines that defy gravity but so far no machine has defied hate.

I like to think they’re working on this at MIT—maybe something like an aluminum spaghetti colander with wires sticking out that you wear on your head and with a flip of the switch voila hate disappears and water turns into chablis.

As far as I know—not far of course—is the only machine that can zap hate is the imagination which we’re currently under utilizing. Like the oft repeated maxim that we only use ten percent of our brains, we simply fail most days to push our imaginations toward loving others.

I expect to be disliked. It’s a certainty. This is the story of Christ. It’s the story of my neighbor.

I expect to be more loving. Will start today.

I expect to spit. (Expectorate)

“I tell you, you will not see the new beauty and the truth, until you make up your minds to spit.” (Malevich, Essays on Art)

Aim carefully.

Read John Edgar Wideman.

Stephen Kuusisto and HarleyABOUT: 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

Have Dog, Will Travel by Stephen Kuusisto

(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 

Denied a Cab Ride, Grieving for Who We Are…

Tomorrow I’m heading to the University of Michigan to participate in a program on accessible publishing hosted by the UM Press and the University’s library. As a blind writer who teaches I know as much as almost anyone about how difficult it often remans to get access to books, journals, online publications, websites, software platforms—it’s a long list. So my hat is off the the folks in Ann Arbor for taking seriously the challenges of access for people with disabilities and putting together an ambitious workshop on accessibility.

In a mood of warm anticipation, packing for my trip from Syracuse to Detroit, I was wholly unprepared for the mean spirited encounter I had by phone with a cab company in Ann Arbor this afternoon. Just recounting what happened is an exercise so objectionable I’m forced to be brisk as the altercation was nasty.

I told the man who answered the phone I needed a ride from Detroit-Ft. Wayne airport to the U of Michigan. He was agreeable. Then I said I had a guide dog. He was disagreeable. He said:

“These dogs are stinky, they go to the bathroom, they’re dirty, I can’t have them.”

“Not the first time this has happened to me,” I thought.

“Guide dogs are allowed everywhere,” I said.

“I don’t care, now you’re going to tell me all about your rights,” he said. (Sneering, he was. Your rights…uttered as if I was some whiny baby.

“Well yes,” I said, “it’s a violation of state and federal laws to deny a blind person and his dog a cab ride.”

“I don’t care,” he said.

“You should care,” I said. “It will become a big story. Plus there’s a huge fine associated with this.”

“I don’t care,” he said.

“This will become a news story,” I said. “I myself write for newspapers like the New York Times…)

It’s hard to describe the effect this had on him. He began shouting that Donald Trump had won the presidency and “you people” (apparently meaning blind New York Times readers) “don’t matter anymore.”

He was absolutely vicious and crowing about how people like me don’t matter.

I said, “well, I’m going to turn you in to the Department of Justice.”

He said he didn’t care.

I hung up.

I went upstairs to tell my wife.

Five minutes later he called me back.

I answered.

He said, “I have allergies.”

He’d apparently shared his conversation with someone else. This was his effort to pull his leg out of a hole.

“It doesn’t matter, you still violated my civil rights,” I said.

He began abusing me again. Hot, geothermic mistreatment.

I hung up.

I posted his company’s name and phone number and a description of what I’d experienced on Facebook.

I didn’t know the man’s name.

He apparently received dozens of phone calls throughout the afternoon, including some from the press.

He’s now claiming victim status. He has allergies. He can’t be expected to take a passenger with a service dog.

The law is very clear on this matter. He doesn’t have to. All he has to do is find me a cab that “will” take me.

He chose contempt and mean-spirited bullying.

Some people on Facebook have messaged me to say he now regrets the matter.

Me too.

Whatever happened to saying, “hey, I know all about having a physical condition! I have one myself. I can’t help you but I’ll get you someone who can.”

Instead he went into a rebarbative snarl and wouldn’t stop.

He apparently told someone on FB that I ruined his day.

I have in fact filed a formal complaint with the Department of Justice and the Michigan Department of Civil Rights.

I’m still shaking. I want to close by saying I’ve heard promptly from the U of Michigan. They’re as upset as I am.

Is Trump’s ascendancy now a patented script?

If you hail from a historically marginalized group you know the answer.

 

 

 

Huffington Post: Dogs in the Playing Field

I’m so very pleased to mention I’ve been invited to be a guest blogger for The Huffington Post. It’s quite an honor. Below is an excerpt published yesterday, December 4. I’d be grateful if you’d visit the site and if you like the post, please feel free to share it with your social circles.  Thank you!

Dogs on the Playing Field

Steve Kuusisto & guide dog, Corky

No one gets a free pass to public life — “public life” — the elusive goal people with disabilities strive for. While the village square is sometimes difficult to enter often a service animal can help. In my case I travel with a guide dog, a yellow Lab named Nira who helps me in traffic. Together we race up Fifth Avenue in New York or speed through O’Hare airport in Chicago. We’re a terrific team. But even 23 years after the passage of the Americans with Disabilities Act and 70+ years since the introduction of guide dogs in the U.S. life in public isn’t always friendly. Lately it seems more unfriendly than at any time since the late 1930s when the blind had to fight for the right to enter a store or ride a public bus. What’s going on?

Read more of Dogs on the Playing Field

Dog Schmooze

Professor Stephen Kuusisto is the author of Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir Planet of the Blind, a New York Times “Notable Book of the Year”. His second collection of poems from Copper Canyon Press, “Letters to Borges has just been released. Listen to Steve read “Letter to Borges in His Parlor” in this fireside reading via YouTube. He is currently working on a book tentatively titled What a Dog Can Do. Steve speaks widely on diversity, disability, education, and public policy. www.stephenkuusisto.com, www.planet-of-the-blind.com

Who are the Political Friends of People with Disabilities?

ADA Restoration Headed to House Markup on Wednesday 
ADA Restoration Moves Forward in the House 
Disability, civil rights and employer groups are working hard to secure support for the negotiated legislated language that has been circulated on JFA and now has the support of more than 50 national and 60 state and local disability groups, the US Chamber of Commerce, the Society for Human Resource Management, the National Association of Manufacturers, the Human Resource Policy Association, and a growing list of companies, including McDonalds, General Motors and Honeywell. Lobbying on the House side for this negotiated deal began in earnest yesterday, focused on the members of the House Education and Labor Committee and the House Judiciary Committee (which also plans to mark up the bill next Wednesday).

To avoid confusion with the bill that was introduced last July, we have begun referring to the negotiated legislation as the ADA Amendments Act. In anticipation of next week’s markup, we are working to counter any efforts in either committee to attach an ADA notification requirement to the bill, a cause that was championed in prior Congresses by Representative Mark Foley of Florida and that is strongly opposed by the disability-civil rights employer coalition working to enact the ADA Amendments Act. We are also working hard to secure White House and Senate Republican support for the negotiated bill.

:::TAKE ACTION:::
At this point, it looks like the bill will receive strong bipartisan support in the committee markups in
the House. We have included a list of the members of the House Education and Labor Committee and the House Judiciary Committee below.
 

·      Contact Members on the House Education & Labor Committee and the House Judiciary Committee between now and Wednesday morning and urge them to support the bipartisan negotiated language that will become the Chairman’s mark in both committees. The names are below.

Locate the Members’ contact information online, or call the Capitol Switchboard at (202) 224-1904 (V) / (202) 224-3091 (TTY) and ask to be connected to their offices by name. 

·      If you haven’t already, consider having your organization "sign on" to the proposed deal language by sending an email to Anne Sommers, JFA Moderator, at aapdanne@earthlink.net. Support of the deal language means you not only approve of its language and terms, but that you also agree to defend it against all attempts by Members of Congress to amend it–unless both sides agree to the amendments.

We will continue to share the list of organizational support with Members of Congress as ADA Restoration moves forward in both the House and Senate in coming weeks. 

·      Attend the markup! The House Education and Labor Markup is scheduled for Wednesday, June 18th, at 10:00 in the Rayburn building, Room 2175. Advocates are encouraged to show their support through numbers. The accessible entrance to the building is the main entrance with the horseshoe drive off South Capitol Street.

Continue reading

Why We Can’t Say Certain Words Anymore. Like "civil rights".

William Peace has written a compelling post about “wheelchair dumping” over at Counterpunch.

He wonders why Americans don’t see abuses against people with
disabilities or crimes against the poor or the elderly as civil rights
issues.

The answer is essentially economic: Ronald Reagan taught Americans
that anything having to do with “minorities” costs money. If a thing
costs money, why by God it must be coming out of the pockets of the
middle class.

(The analogy with Fascist Germany’s public insistence that people
with disabilities were “useless eaters” who cost the ordinary German
pocket money isn’t terribly far fetched.)

In turn, after three decades of this commonplace Reganite
sensibility, Americans can no longer afford to use the term “civil
rights” because the very utterance is a disavowal of the comfortable
assumption that social equity costs too much and will rob the suburbs.

This is why Americans only use the term “civil rights” in a
historical context. We only required civil rights in the “old days”
before the GOP fixed everything.

That’s my “take” but have a look at William Peace’s excellent essay.

S.K.