Disability Today

Like you no doubt I wake and reach for the newspaper. If you’re younger maybe you reach for your Twitter feed but the instinct to see what’s happened overnight beyond the cave is universal. I’m still a newspaper dude though I view them online with screen reading software. Assistive technology keeps me in the game though I don’t really believe in that term since all technology is assistive whether you’ve a disability or not and there shouldn’t be any categorical distinctions.

Reading the news with a computer generated voice is not a good aesthetic experience. Hearing that a woman has just killed her autistic son with a band saw because “she couldn’t take it anymore” is shattering no matter how you encounter the story, but there’s something about the dolorous and impersonal computer that further shivers one–as if my Mac knows something I don’t. As if the Voiceover software invented by Apple to make all their products usable by the blind has been in touch with Hal from 2001 Space Odyssey and together they know disability doom is coming.

Disability doom is a large subject. From pre-natal testing and the abortion of Down syndrome babies to a new militant rightwing hostility to the Americans with Disabilities Act there’s every reason to think there’s a war on the disabled.

As what’s left of Western democratic traditions wilts under corporatized Neo-liberalism and nationalist populism (fascism) the disabled are in the cross hairs. Everyone’s in the crosshairs: high school children, people of color, women, trans and gay people. Fascism, allowed in the mainstream, sees all difference as deviant. Yet there’s something unique about the disabled: they trigger apprehension across all cohorts of diversity. As people literally struggle to survive, it’s easy to imagine the disabled are a burden. They’re a burden at your rally, your business, and yes, on the streets.

Cries come from all directions: we must get the mentally ill back into gated institutions. If we no longer have money to build these facilities we should put them all in prison. Currently the largest mental health faculty in California is the Los Angeles county jail.

Even as I type there’s a concerted movement on Capitol Hill to roll back important parts of the ADA. Even as I type the unemployment rate for the disabled remains at close to 70%. Even as I type veterans with disabilities are being denied services or or made to wait in line for help–a line that grows longer and longer.

As a poet who’s disabled I know a thing or two about irony. When disability is talked about in political circles there’s an assumption that “they” are not “us”–as if disability is something that happens to some other tribe, as if the disabled aren’t your mother, your father, sister, brother, uncles, neighbors, children, children, children. It’s this othering strategy that scares me the most. When the Americans with Disabilities Act was signed into law in 1990 there was a strong bi-partisan sense that the disabled are us. I think there’s an erosion going on. The irony works this way: we celebrate singular disability achievements–Aimee Mullins running on her blades and wearing designer clothing for the cameras; Marlee Matlin’s acting, Stevie Wonder’s music, and yet we think of them as exceptions, even as we imagine they’re representative of a large population. You can’t have it both ways. The disabled are us. Black, white, trans, gay, women, men, oh, wait I’ve already said that.

Right now I’m on a book tour of sorts. When interviewers ask me about my experience growing up pretending I could see more than I really could, asking as though I’m unique in that regard, I say: “this is not an uncommon story” because it’s true, and also to underscore that the singularity of one blind poet shouldn’t be mistaken for an isolating and categorical representation. The disabled I know, both here in the United States and around the world are struggling to stay in the public square.

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 

I Just Lost My Civil Rights Thanks to the GOP

Yesterday, February 15, 2018 the U.S. House of Representatives voted 225-192 to gut the Americans with Disabilities Act.   The bill known as “The ADA Education and Reform Act, or H.R. 620” is designed, so its proponents argue, to prevent frivolous “drive-by lawsuits” brought by lawyers who see inaccessible businesses and want to capitalize on the problem. The bill requires those filing against businesses for violating the ADA to first give business owners 60 days to describe how they’ll fix the problem. Then they have another 120 days to implement the changes. Sounds reasonable right? But the bill is actually designed to make the problem of lawsuits go away and does not put any onus on businesses to actually make changes.

As the Consortium for Citizens with Disabilities correctly notes: “H.R. 620 would create significant obstacles for people with disabilities to enforce their rights under Title III of the Americans with Disabilities Act (ADA) to access public accommodations, and would impede their ability to engage in daily activities and participate in the mainstream of society. Rather, the burden of protecting the right to access a public place is shifted to the person with the disability, who first has to be denied access; then must determine that violations of the law have occurred; then must provide the business with specific notice of which provisions of the law were violated and when; and finally, the aggrieved person with the disability must afford the business a lengthy period to correct the problem.”

The “lengthy period” is a red herring as the bill’s supporters know. Again from the Consortium for Citizens with Disabilities: “We know of no other law that outlaws discrimination but permits entities to discriminate with impunity until victims experience that discrimination and educate the entities perpetrating it about their obligations not to discriminate. Such a regime is absurd, and would make people with disabilities second-class citizens.”

As of this morning my civil rights and the rights of over 50 million Americans are now in jeopardy. Like thousands in the disability community I’ve watched with growing alarm as a well organized largely Republican lead coalition both in state and federal government has moved aggressively to weaken or even eliminate the rights of the disabled. Betsy DeVos has instructed the Department of Education to look the other way when matters of equal access for students with disabilities are on the table. Congress and the Trump administration are cutting Medicate.

These are outrageous developments.

Imagine this scenario if you are not disabled. One day you decide to go to a commonplace establishment. A popular eatery or coffee joint. When you get there the owner says, “Well, I don’t like serving  people with cartoon character tee shirts.” Then he adds: “Mickey Mouse violates my decor. And I don’t have time or resources to change my decor” You’re turned away.

Do you think this analogy is fatuous? I admit it seems ludicrous. But the principle is the same. The shop owner has made a decision, rather consciously, that there’s a type of customer he doesn’t want. Rather than admit his prejudice he complains that resolving the issue will likely cost him plenty. He tells you to go away.

Imagine that you then had to explain through lengthy filings why your rights were violated. Then further imagine that the owner has almost unlimited opportunities to do nothing.

How does that grab you?

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 

No to H.R. 620, No to the GOP, Defend the Disabled!

Some days are hard to bear—you’re a single mom and rent is due. You don’t know where that money is coming from. Child care is hit or miss. Your children are sick and what meagre health insurance you have is being depleted by politicians who imagine poverty is a moral weakness.

There’s a lot of “moral weakness” going around these days in the United States. If you listen to GOP senators, and house representatives you hear that the lame, the halt, the poorest among us are undeserving of public help. There’s something wrong with them, according to the right wing narrative. They’re lazy. Feckless.

The disabled are part of this objectified collection of wanton souls. We’re costly. What with our needs for ramps and Braille and breathing tubes. What with our claims on health care. It’s hard to escape the lingering horror of Adolf Hitler’s dictum that the disabled are just “useless eaters.” The aggressive, rightward tilt of the GOP leans toward the wholesale elimination of Medicaid and deep cuts in medicare. This isn’t some kine of fiction—fake news—the GOP is working overtime to make sure the elderly, the poor, and the disabled have no supports to help them live. Pro-life party indeed.

Right now the GOP is pushing in the house a bill (H.R. 620) which is the product of long standing and relentless lobbying by organizations like the Better Business Bureau, and which is designed to eliminate the capacity of the disabled and their allies to sue businesses for willfully ignoring the accessibility provisions in the Americans with Disabilities Act. Here are some basic bullet points that have been shared nationally by The Disability Rights Education and Defense Fund.

HR 620 will eliminate the need for businesses to be accessible until a complaint is received; there will be no need to make a business accessible until someone complains; that will mean many groups building new buildings, renovating buildings, opening new businesses will not make their services accessible

HR 620 shifts the burden of accessibility from those who offer services to the person with a disability; no other group needs to prove their right to access to publicly offered services

We should not be gutting the rights of people with disabilities; if there is a problem, we should be limiting the actions of a small number of lawyers who are bad actors

HR 620 will take away the civil rights of people with disabilities; would we ever think about eliminating the rights of any other group of Americans? This is disgraceful.

You can read more about H.R. 620 and the cover language the GOP is using to confuse the public about the bill here:

https://dredf.org/wp-content/uploads/2017/08/myths-and-truths-about-the-ada-education-and-reform-act.pdf

**

What does it mean when a nation decides that the most vulnerable of its citizens should be stripped of their rights to participate in civic society? What’s the deep text underscoring predates of the weak?

The answer lies in right wing melodrama. Like the Third Reich, today’s Republicans have a scarcity narrative which is predicated on the idea that Mom and Pop America won’t get what’s due them if we take care of these obviously non-productive people. That we’ve come down to this just 28 years after the wholly bi-partisan adoption of the ADA is both horrifying and quite telling. Not long ago I was at an event in Washington, DC where former U.S. Senator Bob Dole, a wounded veteran, who championed the ADA said openly, “Today I fear that law could never pass on Capitol Hill.”

Please, if you’re reading this, call your local U.S. Representative and say “No!” to H.R. 620.

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

 

The ADA is Under Attack

The ADA is under attack.  Next week, the House will be voting on a bill, H.R. 620 that would undermine the protections of the ADA and take away the rights of people with disabilities.  Please call your Representative and ask them to #VoteNo and #ProtectTheADA

Here are talking points:
·         HR 620 will take away the civil rights of people with disabilities

·         It will make people with disabilities wait for up to 180 days for services that other people have immediate access to

·         The wait may be even longer than 180 days because a business that is making “substantial progress” toward fixing a problem can take even longer than 180 days

·         HR 620 will eliminate the need for businesses to be accessible until a complaint is received; there will be no need to make a business accessible until someone complains; that will mean many groups building new buildings, renovating buildings, opening new businesses will not make their services accessible

·         HR 620 shifts the burden of accessibility from those who offer services to the person with a disability; no other group needs to prove their right to access to publically offered services

·         We should not be gutting the rights of people with disabilities; if there is a problem, we should be limiting the actions of a small number of lawyers who are bad actors

·         HR 620 will take away the civil rights of people with disabilities; would we ever think about eliminating the rights of any other group of Americans? This is disgraceful.

And here is a fact sheet from our colleagues at Disability Rights Education and Defense Fund (DREDF) about the myths and realities of this bill.

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.

Scam Service Dogs are More Complicated than David Leonhardt Knows

David Leonhardt writes about fake service animals and their dishonest owners in the January 5, 2018 New York Times. I don’t know Mr. Leonhardt personally and so I have no idea what his private relationship to disability might be—one shouldn’t assume indifference—but when a writer uses the word “handicapped” in the 21st century one must wonder how versed the author is with disability. (I know at least a thousand disabled people and not one has his or her cap in their hands while begging on a street corner.) I wonder if Mr. Leonhardt would describe women as “wenches?”

It matters what you call us if you’re going to write about us. The disabled are members of society and if one supposes language doesn’t matter consider this: the word “handicap” carries within it (in addition to physical disadvantage) a whiff of dishonesty as in “a race or contest in which an artificial advantage is given or disadvantage imposed on a contestant to equalize chances of winning.” (Merriam-Webster.com)

The spectacle of American life has always carried “sub rosa” a popular suspicion, often translated into entertainment, that the disabled (or at least the ones seen on the streets) are very likely nothing more than scam artists. In popular imagination the words scam and handicap go together like baseball and hot dogs. It might also interest Mr. Leonhardt and his readers to know that the first motion pictures distributed in the United States invariably presented comic figures—men mostly—who swindled the public by feigning disability.

Comedy is one thing, reality where disability is concerned was often different. In the very era when those films were made “Ugly Laws” were enforced across the country—laws designed to keep the disabled off the streets and out of the public eye. By the late 19th century the rising middle class wanted to go window shopping or sit in cafes like the flaneurs of Paris. Public life offered a new kind of spectacle, the very streets were prosceniums. Asylums and prisons were hastily constructed to hide the disabled from view.

David Leonhardt’s article aims to highlight the current wave of faux service animals being passed off as necessary by airline customers who want nothing more than to bring their pets on airplanes. As a guide dog user I’m glad that he’s taking on the story. People who do not have disabilities are faking them so they can take their animals anywhere. I think Leonhardt’s motive for writing his piece was good. The problem is that public attitudes about disability are not informed by knowledge and sophistication. As I wrote just last week:

In the world of service animals, guide dogs are the gold standard. They are trained to guide the blind through heavy traffic, watch for low-hanging branches, take evasive measures when cars or bicycles run red lights, watch for stairs and even prevent their partners from stepping off subway platforms. Yes, they’re also trained to stay quiet and unobtrusive in restaurants and on public transportation. This professionalism is possible because guide dog schools spend tens of thousands of dollars breeding, raising and training each dog.

Leonhardt is right: the woman with a peacock claiming in the airport her bird is some kind of emotional support creature is in fact a problem. He’s also right to point out that when travelers feigning disabilities bring their untrained dogs on aircraft (with phony papers of course) they’re harming those of us who have genuine disabilities. They’re also trading on the extraordinary professionalism well trained service dog users and their canine companions have demonstrated for decades. Yes, there’s deception going on. I’ll grant this. And yes, this problem affects me and all of the disabled who rely on guide dogs, PTSD service dogs, hearing alert dogs, seizure alert dogs, mobility assistance dogs—these are dogs serving real needs and these teams have civil rights to travel wherever the public goes.

But forgive me: “scam” isn’t the right word to fairly describe what’s going on. Scam reeks of the old trope that the disabled are unseemly and might be, just like the beggars who imitated them, dishonest. Moreover I suspect many people who claim they require untrained dogs to manage even the simplest elements of daily life really believe this. In many respects the conundrum of fake service animals is more a sociological or psychological dynamic than a matter of the Americans with Disabilities Act. Beat with me here. The ADA attempts to guarantee the privacy of the disabled by stipulating if you have a service dog you cannot be asked to show proof of your disability.  This is fair. It’s the same principle employed in pharmacies when you read signs that say: “Please stand behind this line to guarantee customer privacy.” It ain’t nobody’s business and you better believe Americans like their privacy.

If you’re a veteran who has a traumatic brain injury or post traumatic stress and you have a fabulously trained canine companion to assist you, I’ll bet you don’t want to tell everyone about it. Certainly not in the cramped entryway of a jetliner.

So you see there’s nuance and scruple to this where the disabled are concerned. That our capacity and right to travel with our professional dogs is being eroded by elements of the public who want to game the system is undeniable.

Finally where the airlines are concerned and speaking as a seasoned traveler most of their personnel are poorly trained—as are the disability support teams in airports who are generally subcontractors. Every year the airlines destroy thousands of wheelchairs when paralyzed travelers are forced to hand them over as luggage. In turn pet owners who put their pets in cargo know that this is a life and death gamble. If the airlines can’t safely transport wheelchairs and poodles why would any emotional pet owner want to risk putting Fido in the cargo hold?

The airlines have as much to do with this problem as those needy pet owners. Make it safe for non-essential pets to fly down below and United, Delta, et.al. will go a long way toward solving this problem.

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 

Delta: Leave the Blind Alone

As a blind traveler who uses a guide dog I’ve flown a lot of places. My professionally trained dog lies under my feet and never stirs, no matter how long the flight. I’ve had four such dogs and all of them were trained by a top notch school in New York called Guiding Eyes for the Blind. Although going places with a disability isn’t always easy its generally achievable because protective laws are in place that guarantee the disabled rights of passage. In the United States both state laws—known as “white cane laws”—and federal laws, including the ADA and the Air Carriers Transportation Act have made it possible for blind people and their exemplary dogs to go anywhere the public goes.

In the world of service animals guide dogs are the gold standard. Trained to guide the blind through heavy traffic, watch for low hanging branches, take evasive measures when cars or bicycles run red lights, watch for stairs—even prevent their partners from stepping off subway platforms, everyone can agree that they’re the “few, the proud” just like the Marines. Yes, and they’re also trained to stay quiet and unobtrusive in restaurants and when using public transportation.

This canine professionalism is possible because guide dog schools spend tens of thousands of dollars breeding, raising, and training each and every dog. In turn guide dog teams have earned the respect and admiration of the public here in the United States and around the world.

Recently Delta Airlines, in an effort to curtail the appearance of fake service dogs on airplanes has issued a new requirement that actually hurts the blind. Delta is demanding that service dog users upload veterinary health certificates to their website 48 hours prior to flying. This is essentially a stumbling block—an obstacle designed to impede the blind while doing very little to halt illegitimate or phony service dogs from boarding flights. As a blind person who uses a tasing computer I can tell you that navigating websites and uploading documents isn’t easy. In fact its often ridiculously hard.

The blind and their amazing dogs are not the problem for Delta or other airlines. Fraudulent service dogs are a problem for sure, but really, do they think dishonest people who are already passing off their pets as professionally trained dogs will be unable to attach rabies certificates on a website? For sighted people this is a snap.

All guide dog users carry ID cards issued by the guide dog schools, certifying that the dog team pictured is legitimate and has graduated from a real service dog training program.

I don’t know what to do about the sharp increase in fake service animals on airlines, but I do know Delta and other carriers should leave the blind alone. We’ve earned our passage.

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 professorship in the Center on Human Policy, Law, and Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

The GOP and Medicaid

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

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

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

This morning it’s starting to look that way.