Disability, Words Withheld, and Deadly Fictions

 

70 plus years ago the Germans were exterminating the disabled, a matter that still remains obscure to many of our regular customers by which I mean “the public.” (In my experience when you’re forced to use “the public” in any rhetorical sense you’ve already been exiled.) But today I’m not exiled, not Prospero, not hiding. I’m aware of epochal events, mindful of how they continue to influence us. The recent murder of 19 disabled citizens in Japan by a man whose manifesto called for the extermination of crippled people has garnered less than adequate attention in the world press, a fact that’s horrified disability rights communities across the globe. In her excellent article “Why did the mass murder of 19 disabled people in Japan barely rate?” (see link above) published in the Australian journal Daily Life, Carly Findlay writes:

This massacre is Japan’s biggest mass killing since World War II. Yet coming as it did amidst a series of ISIS-related terror attacks and unrest around the world, the media has been relatively quiet about this shocking attack. While I acknowledge the existence of compassion fatigue, I couldn’t help noticing there was little social media solidarity – unlike for Paris, Nice, Orlando, Kabul, Baghdad. There was no hashtag. No public outcry. Not even prayers. When I posted about it on Facebook, people told me they hadn’t heard about it. 

In this age of algorithmic curation, it’s no wonder this hasn’t been popping up all over our newsfeed: barely anyone is talking about it. Very few people are talking about the targeted massacre of 19 disabled people.

 

The murders in Japan raise an epochal question: “whose lives are finally, expendable in a neoliberal age of global human devaluation?” Note, I’d not have written this ten years ago as I’d have thought I knew the answer—the “inconvenient lives” of post-colonialism: Rwanda, Sudan, Iraq, but surely I’d not have said indifference to the murders of disabled men, women, and children was a de facto condition. I’d have been wrong ten years ago; insufficiently informed; limited by my own provincial belief that the Americans with Disabilities Act and the advent of Disability Studies portended advancements beyond the Ivory Tower, that the age of disability dignity was arriving, had arrived, would simply get better and better. And it has happened to a considerable extent. The United Nations Convention on the Rights of Persons with Disabilities has inspired international agreement that the disabled require and must be guaranteed access to all the advantages of civil society. The CRPD is, while not perfect a bold step, but it has yet to be fully implemented (the Republican House of Representatives here in the United States refuses to endorse signing it.) Still it’s a bold global statement that disabled lives are not just “worth” living—they ought truly to be lived.

 

In his book The Biopolitics Of Disability: Neoliberalism, Ablenationalism, And Peripheral Embodiment David T. Mitchell uncovers some of the dynamics of neoliberalism’s approach to the disabled body—barrier removal and an understanding of the very real effects of physical incapacity are nowadays routinely encoded into a globalized social contract. What Mitchell aims (among other things) to show is how the lived experience of disablement is not understood—that what we have is tolerance but not a deep embrace of disability based cultural practice. In turn, the absence of this embrace leaves open a broad incapacity (both locally and globally) to understand the alternative body, its diverse embodiment as something at once both real and abiding. The press can’t report on the murders in Japan because it has no vocabulary, no idiom, no reference point for understanding crippled lives as being rich and valuable. No language, no conception. No conception no reporting.

Those of us who teach disability related subjects from an inclusive set of discursive practices acknowledge the opposition: the squinting, rebarbative bio-ethicist and philosopher Peter Singer who has long argued disabled infants lack social value; the contemporary best seller by a middling and moist writer named Jojo Mayes which suggests a paralyzed life isn’t worth living.

We also don’t forget that inclusion within the world of neoliberalism is never an embrace but a form of sufferance. We’re allowed to be here and often barely. This is hardly hysteria. One merely has to consider how recent remains the publication of Robert Jay Lifton’s The Nazi Doctors which stands as a testimony against eugenics and human experimentation—the broader knowledge that disability is fraught with horror still remains poorly understood. Small wonder then, that the words of 26 year old Satoshi Uematsu who stabbed 19 disabled people to death in Japan should haunt the cripple-community, while seeming so foreign to reporters. This is what he wrote in his “manifesto” where he explains his butchery:

My reasoning is that I may be able to revitalise the world economy and I thought it may be possible to prevent World War III.

I envision a world where a person with multiple disabilities can be euthanised, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.

I believe there is still no answer about the way of life for individuals with multiple disabilities. The disabled can only create misery. I think now is the time to carry out a revolution and to make the inevitable but tough decision for the sake of all mankind. Let Japan take the first big step.

 

Consider in turn the following prose from the US Holocaust Museum’s website:

On July 14, 1933, the German government instituted the “Law for the Prevention of Progeny with Hereditary Diseases.” This law called for the sterilization of all persons who suffered from diseases considered hereditary, including mental illness, learning disabilities, physical deformity, epilepsy, blindness, deafness, and severe alcoholism. With the law’s passage the Third Reich also stepped up its propaganda against the disabled, regularly labeling them “life unworthy of life” or “useless eaters” and highlighting their burden upon society.

The term “euthanasia” (literally, “good death”) usually refers to the inducement of a painless death for a chronically or terminally ill individual. In Nazi usage, however, “euthanasia” referred to the systematic killing of the institutionalized mentally and physically disabled. The secret operation was code-named T4, in reference to the street address (Tiergartenstrasse 4) of the program’s coordinating office in Berlin.

Ashes from cremated victims were taken from a common pile and placed in urns without regard for accurate labeling. One urn was sent to each victim’s family, along with a death certificate listing a fictive cause and date of death. The sudden death of thousands of institutionalized people, whose death certificates listed strangely similar causes and places of death, raised suspicions. Eventually, the Euthanasia Program became an open secret.

On August 18, 1939, the Reich Ministry of the Interior circulated a decree compelling all physicians, nurses, and midwives to report newborn infants and children under the age of three who showed signs of severe mental or physical disability. At first only infants and toddlers were incorporated in the effort, but eventually juveniles up to 17 years of age were also killed. Conservative estimates suggest that at least 5,000 physically and mentally disabled children were murdered through starvation or lethal overdose of medication.

     

**

Silence becomes politicized even as it lives in the open. Since we know the murders of 19 disabled citizens in Japan stand as a heinous violation of human rights, how shall the stasis of quiet best be understood? Could it be as simple as this? That to acknowledge the horror would mean, necessarily acknowledging the terror of crippled refugees; of beggars who crawl on their arms; of homeless veterans whose wheelchairs have broken down; of the desperate blind in China? Is it the case that the particulars of human rights are too challenging for journalism in these times?  

from “Letters to a Young Cripple #8–Disability and Refugees”

Dear __________,

 

Each day I wonder how many disabled souls will be tortured or killed around the globe. I refract this, think of my black friends, their fears, the fright of women and children, all refugees—kaleidoscopic panic-shards spin even before I’ve had my first cup of coffee.

It does me no good saying: “the world was always this way.” It doesn’t help to observe: “It’s just the smart phone that makes us aware of it”—as if prior generations were clueless about atrocities. Voltaire needed no iPhone to write his refrains about the Bulgarians.

Howard Zinn wrote: “There is no flag large enough to cover the shame of killing innocent people.”

Every time I see an American flag spread across a Major League outfield prior to a baseball game I think of crippled refugees.

There are millions upon millions of disabled refugees right now. According to the Women’s Refugee Commission:

As many as 7.7 million of the world’s 51 million people displaced by conflict have disabilities. People with disabilities are among the most hidden and neglected of all displaced people, excluded from or unable to access most aid programs because of physical and social barriers or because of negative attitudes and biases. They are often not identified when aid agencies and organizations collect data and assess needs during and after a humanitarian disaster. They are more likely to be forgotten when health and support services are provided. Often, refugees with disabilities are more isolated following their displacement than when they were in their home communities.

 

There is no flag large enough.

See Disability Inclusion: From Policy to Practice.

As a single person, a sole disabled writer, I reflect routinely on the phrase “it does me no good” as it’s the expression you want if you want to trivialize human rights—the old “liberal” business of saying “it was always this way” to ameliorate horror. The successive phrase that always accompanies it is “at least we know it now.” (The conservative version is: “It was always this way and it’s never hurt us.”)

It does me no good to say I’m helpless.

It does me no good to say I’ve my own problems.

No good to say I’ll think about it tomorrow.

In October 2010 The United Nations High Commission on Refugees issued the following recommendations to the General Assembly. Forgive me, I need to quote this in its entirety:

The Executive Committee,

Emphasizing that this Conclusion applies to refugees with disabilities and other persons with disabilities protected and assisted by UNHCR in accordance with the provisions of international conventions and relevant United Nations General Assembly resolutions,

Taking note of its Conclusions No. 47 (XXXVIII), No. 74 (XLV), No. 105 (LVII), No. 107 (LVIII), No. 108 (LIX) and No. 109 (LX) and the entry into force of the Convention on the Rights of Persons with Disabilities and its Optional Protocol on 3 May 2008,

Acknowledging that refugees and other persons with disabilities include those who have long-term physical, mental, intellectual and sensory impairments, which, in interaction with various barriers, including attitudinal and environmental barriers, may hinder their full and effective participation in society on an equal basis with others,

Recalling the recognition by the Convention on the Rights of Persons with Disabilities of the inherent dignity and equality of persons with disabilities, recognizing that disability is an evolving concept and acknowledging the valued existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities,

Reaffirming the importance of mainstreaming age, gender and diversity in identifying and responding to the views and needs of all persons with disabilities; and taking note with appreciation of UNHCR’s involvement in the inter-agency support group for the Convention on the Rights of Persons with Disabilities to support the promotion and implementation of the Convention on the Rights of Persons with Disabilities and its Optional Protocol,

Recognizing that the specific needs of persons with disabilities are often overlooked, especially in the early phases of humanitarian emergencies, and that they, particularly women, children and older persons with disabilities, are exposed to discrimination, exploitation, violence, and sexual and gender-based violence, and may be excluded from support and services,

Recognizing that children with disabilities are at a greater risk of abuse, neglect, abandonment, exploitation, health concerns, exposure to the risk of longer term psycho-social disturbances, family separation and denial of the right to education,

Acknowledging that services and facilities, including assistance programmes and protection, may be inaccessible to persons with disabilities,

Recognizing that refugees with disabilities may be excluded from support and services when repatriating and often have fewer opportunities for other durable solutions, namely local integration and resettlement,

Reaffirming the primary responsibility of States to take all appropriate measures to protect and assist persons with disabilities, in all situations,

Recognizing that host States, which are often developing countries, have limited resources and face various challenges in providing such services and facilities; reaffirming, therefore, the international community and UNHCR’s role to assist States in fulfilling these responsibilities, in the spirit of international cooperation and burden sharing,

(a) Calls upon States and UNHCR, in cooperation with relevant partners where applicable, to protect and assist refugees and other persons with disabilities against all forms of discrimination and to provide sustainable and appropriate support in addressing all their needs;

(b) Also calls upon States, UNHCR and all relevant partners to raise awareness on disability issues and to foster respect for the rights and dignity of persons with disabilities, by providing training on the needs, rights and capabilities of refugees and other persons with disabilities, among other things;

(c) Recommends that States, UNHCR and relevant partners ensure where appropriate a swift and systematic identification and registration of refugees and other persons with disabilities, with particular attention to those who cannot communicate their own needs, in order to identify their protection and assistance needs, including as part of a global needs assessment;

(d) Recommends that States include refugees and other persons with disabilities in relevant policies and programmes and provide access to services, including through the issuance of relevant documentation;

(e) Encourages States, UNHCR and all relevant partners to ensure the participation of refugees and other persons with disabilities through appropriate consultation in the design and implementation of relevant services and programmes;

(f) Encourages States, UNHCR and all partners to communicate information, procedures, decisions and policies appropriately to ensure that these are accessible and understood by refugees and other persons with disabilities;

(g) Encourages States, UNHCR and partners to enable children and youth with disabilities to access appropriate protection, assistance and education, and to ensure the inclusion of women and girls with disabilities, protected and assisted by UNHCR, in programmes to prevent and respond to sexual and gender-based violence and other forms of exploitation;

(h) Encourages States, UNHCR and relevant partners to adopt and implement appropriate and reasonable accessibility standards, including at the start of an emergency, and to ensure that all mainstream services and programmes as well as specialized services are accessible to persons with disabilities, including those services and programmes provided within the framework of international cooperation;

(i) Reaffirms the importance of international cooperation for improving the living conditions of refugees and other persons with disabilities, particularly in developing countries, through ensuring timely availability of adequate humanitarian and development funding and other resources, including sufficient support for host communities;

(j) Recommends that States and UNHCR, as applicable, ensure that refugee status determination and all other relevant procedures are accessible and designed to enable persons with disabilities to fully and fairly represent their claims with the necessary support;

(k) Recommends that States, in cooperation with UNHCR and relevant partners, ensure that refugees with disabilities have equality of opportunity for durable solutions and are provided appropriate support;

(l) Recommends that States, in cooperation with UNHCR and relevant partners upon request, ensure that persons with disabilities, other than refugees, protected and assisted by UNHCR have equality of opportunity for solutions and are provided appropriate support;

(m) Requests UNHCR to include disability awareness in its policy guidelines and training programmes and to ensure that relevant policies, guidelines and operating standards for UNHCR staff and implementing partners are in line with this Conclusion;

(n) Requests UNHCR to provide Member States with periodic updates on the follow-up to this Conclusion, including relevant financial data.

**

It grieves me that “literacy” can’t be found among the resolutions. Of disability and literacy there’s much to be said but notably the path to education requires requisite and appropriate accommodations as well as entry. I think, “how do we get iPads and Talking Books into the hands of refugees?” Wheelchairs just to get to school?

Refugee literacy is crucial as their lives are entirely like our own by which I mean, anyone can be displaced anytime, anywhere. With global terror and climate change the 21st century is shaping up to be the age of broken, wandering people.

Since I don’t believe in dystopian movies, I still wave books, accessible books, inviting books.

Employment Bullying and the New Figurative Disablement of Workers

There is a new “old” outbreak in America which for lack of a better term can be described as “workplace intimidation” and can also be called organizational bullying. One of the best online websites devoted to the problem is workplaceintimidation.com which has many resources and tips for how to respond to work day abuse and abusers. The site offers consulting services as well as information and is the brain child of Judith Munson. Judith calls work place bullying the “silent epidemic.”

Speaking as a disabled person I must say I’ve experienced lots of inappropriate behavior in the work place as “the disabled” are generally imagined to be workers of sufferance—that is, so the thinking does, we’re lucky to have a job and we should therefore shut up about our needs for accommodations or, gadzooks, our wish to be respected. Talk to people with disabilities who work (we’re about 30% of the disability population, on a good day) and you’ll hear stories of maltreatment that will curl your hair. One of the best books to tackle the subject is Ruth O’Brien’s groundbreaking volume Voices from the Edge which pairs trenchant legal analysis alongside first person stories of disability employment discrimination. (Disclosure: I have a short story in the book.)

What interests me is that discriminatory practices within management, which have always been directed at child laborers, women, people of color, and those few lucky disabled who actually land a job, are now widening out, becoming a tacit style, a matter that encourages thoughts of social contagion. Judith Munson explains this may have something to do with the recession of 2008 and writes:

Financial experts claim that the current recession and slow recovery has been extremely stressful on employers and managers. This might be to blame for the upturn in people using intimidation to get better performance and more productivity from their employees.

A lot of people these days are being overrun by more and more responsibilities where they work and they might not realize that they are actually using intimidating behavior on other co workers.Unfortunately, the people that use intimidation and bullying tactics in the workplace usually get away with the abuse. They will usually receive good periodic evaluations from their superiors and end up climbing the corporate ladder ahead of others.

I don’t think there’s a better description of the neoliberal workplace than this. From universities to manufacturing plants, from financial services companies to auto repair shops, contemporary employment centers on demanding fewer people do more and more. Because this is only nominally possible in most cases intimidation is the incentivizing dynamic of choice. Bonuses are out. Teamwork is severely limited. Transparency has gone down the drain. As the folk singer Greg Brown once sang: “You’re at pink slip’s mercy in a paper universe…”

In other words you’re lucky to have a job at all. Don’t talk back. Which leads me to my point: neolib work environments have successfully transformed able-bodied employees into disabled ones.Of course not literally but still, consider what’s generally being seen and reported across a wide landscape. Being asked to do more with less is eerily similar to being asked to do a job without the accommodations one needs. If the employee asks for help, she’s tagged as incapable. In disability circles we know all about this. It’s a very old story.

But the similarity doesn’t stop there. If you work differently, have a unique style, have opinions of any kind that are not in step, then you’re uppity. (This figurative re-wrapping of employees happens nowadays at dizzying speed. One minute Gladys was respected for her candor, the next, she’s a malcontent.) Moreover once personnel, whether they’re college faculty or accountants are told that their righteous indignation at being overworked or ignored is a character flaw, then bullying is OK—don’t “difficult” people need to be put in their place?

In order for this management charade to be widely accepted people must broadly fear for their jobs. Fear in the work force is what they used to call in the insurance business “the incitement premium”—you’ll buy anything if you’re properly scared.

Bullies must have buddies to rule the playground. Me? I’m not buying. But I can say what I think. I have tenure. At least today.

 

 

from a Journal, Circa 1980

 

I climbed to the top of Helsinki’s highest ski jump and swayed with my arms out like a fluid moon-struck Jesus but I then climbed down again, thinking of my mother.

**

Out in the courtyard as the evening news was going on, I played with a wooden top and laughed because it sounded like my cat.

**

You don’t have to be well known. Repeat. It’s enough to read books and drink tea. Rain welcome.

**

I love small littered towns one sees from the train.

**

The sun in memory is always as strong as before.

**

Theodore Roethke. My buttercup.

**

Water shining through the trees. What a bargain!

**

Blind I drive home through the glitter of moon-skin treetops.

 

from “Letters to a Young Cripple” #7

Dear __________,

Someone wrote me and said I’m not sufficiently optimistic in these letters. This could be true. I have to conceive of it. I’ve plenty of faults. I already covered self-regard. Sure. I’ve a head on me. And a mouth. But I’ve a dram of self-awareness and I’m sipping.

The trouble with cripple optimism is I don’t like pom poms. Disability sentiment, treacle, the tawdry Telethons, the sloganeering—“the only disability is a bad attitude” these leave me colder than the dead hands of Charlton Heston.

I do believe disability optimism rests in getting the job done, whether that’s protesting the outright inaccessibility of a program, service, or building, or persisting in endeavors that make us stronger. There’s no sugar flavor when it comes to what I hold because cripples too often have to eat their own hearts. Do you remember the famous poem by Stephen Crane? Here it is:

In the Desert

In the desert

I saw a creature, naked, bestial,

Who, squatting upon the ground,

Held his heart in his hands,

And ate of it.

I said, “Is it good, friend?”

“It is bitter—bitter,” he answered;

“But I like it

“Because it is bitter,

“And because it is my heart.”

Contrast this with the following quote from Winston Churchill:

May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism.

Now, Crane’s poem would be entirely different if it began:

In the desert

I saw a courageous man…

Which begs the question, is it courage and it’s sister, optimism, which raises us from being merely beasts?

A false dichotomy perhaps, but it’s a point well taken, for if optimism is at least worthy of this question it’s worth imagining as one of the intellectual ingredients necessary for a productive life.

Eating your heart is not in any sense a profitable activity.

But let’s say an optimist could eat his heart. He would, I think, say it is tough.

from “Letters to a Young Cripple” #6

Dear ________,

I have this vexing personal trait, one I’m not proud of, and it’s this: I tend to think highly of myself. This isn’t quite vanity, it’s too much a qualité douce—but certainly I’m unintimidated most of the time. There are variants of course—one minute I’m a bit of a prick, the next I’m sulking since I think I’m the most interesting person in the room and my wits are being sucked straight out of my eyes by people blabbing moist gossip and so I take many trips to the WC just so I can properly hold my head in my hands. King George V said: “always go to the bathroom when you have a chance,” but I suspect he meant it differently than I do. It’s the only place when you’re in a restaurant trapped with people having sub-Cartesian table talk.

Now boredom is an interesting topic since it gets at morality. As Bertrand Russell said: “Boredom is therefore a vital problem for the moralist, since at least half the sins of mankind are caused by the fear of it.” I think highly of myself, dislike plodding speech, feel the itch of the damned when facing commonplace assumptions. If you want to be an activist you should know something about restiveness and irrationality. Otherwise you really are a prick. Thinking highly of yourself poses several dilemmas but this is the perhaps the most notable. God help us! The ordinary bugs me! Compassion fails! I want to jump out the window! But at least I know it. And I know what it means in ethical terms. I make choices and principle among them is the decision to not detest people. In a boring meeting? Work on your favorite chess problem. Recite to yourself a psalm or sonnet. Name all the players on the 1969 New York Mets. Just don’t do what I’ve done when my spirit has failed—don’t tell the poor sods what cattle they are—and trust me, as a crippled activist you’ll face colluders, quislings, prevaricators, and worse, and I’m merely saying, don’t let your outrage with the boring quotidian be your first move. I tell you I’ve made that mistake. As a blind child I was told I didn’t belong so often, so routinely, by so many boors that my half-sainted skin is pocked with the scars of custom and you better believe this is why I think highly of myself, for as of today I’ve never hit anyone, never kicked a dog, though I’ve slobbered and spit when confronted by meagre conventions and the unwritten rules of ableism. Yes! Think highly of yourself! Try like hell not to hate the unpleasant and despicable apparatchiks. When all else fails, tell them off. But don’t do it just because you’re stupefied.

Here concludes the sermon. Except for this. Disabled lives are in peril all over the world. Anger beats boredom but it seldom promotes effective change. Wits do. Crawling up the Capitol’s steps will do it. Standing up for those who don’t have voices or opportunities will always do it. But never contempt. Please don’t be like me when I’m weak and in a state of high offense. And then, stay unintimidated.

Will you forgive me if I end with a poem? This is by Sam Hamill, one of America’s finest poets and translators. The poem is really a sutra, not in the sense of summary, but something from the heart of Buddhist tradition. It speaks as all great poems do straight from the soul:

True Peace

Half broken on that smoky night,

hunched over sake in a serviceman’s dive

somewhere in Naha, Okinawa,

nearly fifty years ago,

I read of the Saigon Buddhist monks

who stopped the traffic on a downtown

thoroughfare

so their master, Thich Quang Dúc, could take up

the lotus posture in the middle of the street.

And they baptized him there with gas

and kerosene, and he struck a match

and burst into flame.

That was June, nineteen-sixty-three,

and I was twenty, a U.S. Marine.

The master did not move, did not squirm,

he did not scream

in pain as his body was consumed.

Neither child nor yet a man,

I wondered to my Okinawan friend,

what can it possibly mean

to make such a sacrifice, to give one’s life

with such horror, but with dignity and conviction.

How can any man endure such pain

and never cry and never blink.

And my friend said simply, “Thich Quang Dúc

had achieved true peace.”

And I knew that night true peace

for me would never come.

Not for me, Nirvana. This suffering world

is mine, mine to suffer in its grief.

Half a century later, I think

of Bô Tát Thich Quang Dúc,

revered as a bodhisattva now—his lifetime

building temples, teaching peace,

and of his death and the statement that it made.

Like Shelley’s, his heart refused to burn,

even when they burned his ashes once again

in the crematorium—his generous heart

turned magically to stone.

What is true peace, I cannot know.

A hundred wars have come and gone

as I’ve grown old. I bear their burdens in my bones.

Mine’s the heart that burns

today, mine the thirst, the hunger in the soul.

Old master, old teacher,

what is it that I’ve learned?

—Sam Hamill

 

AG Healey and National Federation of the Blind Announce Agreement to Make Health Care Kiosks Accessible to Blind Consumers

FOR IMMEDIATE RELEASE                                                   

July 26, 2016

MEDIA CONTACT:
Emalie Gainey (AGO)
(617) 727-2543

Chris Danielsen (NFB)
(410) 262-1281

AG Healey and National Federation of the Blind Announce Agreement to Announce Agreement to Make Health Care Kiosks Accessible to Blind Consumers

Announcement Marks 26th Anniversary of Americans with Disabilities Act

BOSTON – On the 26th anniversary of the passage of the Americans with Disabilities Act (ADA), Attorney General Maura Healey and the National Federation of the Blind (NFB) announced a first-of-its-kind agreement with Pursuant Health, Inc. to make its self-service health care kiosks accessible to blind consumers.

The agreement reached with Pursuant Health, an Atlanta-based company that manufactures and operates thousands of self-service health care kiosks in retail stores nationwide, provides meaningful benefits to individuals nationwide who are blind or who have low vision, including 27,000 Massachusetts residents who are legally blind.

“Technology should be used to improve people’s lives, not create barriers,” said AG Healey. “We must take steps to ensure that all Massachusetts residents have equal access to health care services, and that technology is accessible to consumers with disabilities. We are pleased to have worked with the NFB and Pursuant Health to make these kiosks accessible.”

Pursuant Health’s kiosks offer important biometric health screenings, including vision assessments, blood pressure screening, weight and BMI assessments, and pain management advice. Health risks and recommendations for further testing or treatment are displayed on the kiosk or sent to the consumer via email. Until now, however, blind consumers have not been able to use the kiosks effectively.

“Living the lives we want as blind people includes monitoring our own health so that we can take steps to maintain or improve it,” said Mark A. Riccobono, President of the NFB. “Health information has the potential to be more accessible than ever to the blind with twenty-first-century technology, but only if the manufacturers of technology keep accessibility in mind. We are delighted to have reached this agreement with Pursuant Health, working with the outstanding civil rights advocates in Attorney General Healey’s office, and believe that it will result in health information kiosks that set an industry-leading example.”

According to the terms of the agreement, Pursuant Health will implement a detailed project plan to make their kiosks and website accessible to consumers who are blind or visually impaired. The kiosks will be made accessible over time and will be reformatted to provide audio instructions and easily locatable “hot spots” on the kiosk screens to help blind consumers navigate the system. Pursuant Health will also offer membership options to make it easier for blind consumers to activate the kiosks and track their individual health assessments.

Finally, Pursuant Health will make payments totaling $95,000 to the AG’s Office and the NFB, which will be used to further improve access and opportunity for individuals with disabilities.

“Massachusetts Commission for the Blind applauds the efforts of Attorney General Healey for negotiating a settlement that takes one more important step closer to providing equal access to technology and health care,” said MCB Commissioner Paul Saner.

The agreement is the most recent result of collaboration between the AG’s Office and the NFB. Past collaborations have included making Monster.com’s websiteApple’s iTunes services and Cardtronics ATMs fully and equally accessible to blind consumers.

State and federal laws not only prohibit disparate treatment of individuals with disabilities in employment and housing, but also require that all businesses operating places of public accommodation provide people with disabilities with full and equal enjoyment of their goods, services, and facilities.

Continuing her efforts to protect the civil rights of all Massachusetts residents, AG Healey formed a Disability Rights Advisory Committee in July 2015. The Committee is comprised of advocates and experts who meet on a regular basis to consult with and advise AG Healey and her staff on matters pertaining to inclusion, access, and equality for individuals with disabilities. Please click here for more information on AG Healey’s disability rights work since taking office.

This matter was handled by Assistant Attorney General Genevieve C. Nadeau, Chief of AG Healey’s Civil Rights Division on behalf of the Commonwealth, and by Daniel F. Goldstein of the Baltimore firm Brown, Goldstein & Levy, LLP on behalf of the NFB.

###About the National Federation of the Blind

The National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people, because low expectations create obstacles between blind people and our dreams. You can live the life you want; blindness is not what holds you back.

National Federation of the Blind

200 East Wells Street
at Jernigan Place
BaltimoreMD 21230
United States

(410) 659-9314 

from “Letters to a Young Cripple” #5

Dear ________,

The most despairing moments in literature stay with me and frequently become plastic, malleable, and serviceable. To put it another way: if you can’t know everything, you better know this—a boy named Raskolnikov saw a dying horse beaten in the street, and the barbarism is imprinted so deeply one understands cruelty is contagious and the sight of it often destroys a burgeoning life. Easy to say it, but impossible to forget after reading Dostoyevsky:

Near the entrance of the tavern stood a cart, but a strange cart. It was one of those big carts usually drawn by heavy cart-horses and laden with casks of wine or other heavy goods. He always liked looking at those great cart-horses, with their long manes, thick legs, and slow even pace, drawing along a perfect mountain with no appearance of effort, as though it were easier going with a load than without it. But now, strange to say, in the shafts of such a cart he saw a thin little sorrel beast, one of those peasants’ nags which he had often seen straining their utmost under a heavy load of wood or hay, especially when the wheels were stuck in the mud or in a rut. And the peasants would beat them so cruelly, sometimes even about the nose and eyes, and he felt so sorry, so sorry for them that he almost cried, and his mother always used to take him away from the window. All of a sudden there was a great uproar of shouting, singing and the balalaïka, and from the tavern a number of big and very drunken peasants came out wearing red and blue shirts and coats thrown over their shoulders.

“Get in, get in!” shouted one of them, a young thick-necked peasant with a fleshy face red as a carrot. “I’ll take you all, get in!”

But at once there was an outbreak of laughter and exclamations in the crowd.

“Take us all with a beast like that!”

“Why, Mikolka, are you crazy to put a nag like that in such a cart?”

“And this mare is twenty if she is a day, mates!”

“Get in, I’ll take you all,” Mikolka shouted again, leaping first into the cart, seizing the reins and standing straight up in front. “The bay has gone with Matvey,” he shouted from the cart—”and this brute, mates, is just breaking my heart, I feel as if I could kill her. She’s just eating her head off. Get in, I tell you! I’ll make her gallop! She’ll gallop!” and he picked up the whip, preparing himself with relish to flog the little mare.

“Get in! Come along!” The crowd laughed. “D’you hear, she’ll gallop!”

“Gallop indeed! She has not had a gallop in her for the last ten years!”

“She’ll jog along!”

“Don’t you mind her, mates, bring a whip each of you, get ready!”

“All right! Give it to her!”

“They all clambered into Mikolka’s cart, laughing and making jokes. Six men got in and there was still room for more. They hauled in a fat, rosy-cheeked woman. She was dressed in red cotton, in a pointed, beaded headdress and thick leather shoes; she was cracking nuts and laughing. The crowd round them was laughing too and indeed, how could they help laughing? That wretched nag was to drag all the cartload of them at a gallop! Two young fellows in the cart were just getting whips ready to help Mikolka. With the cry of “now,” the mare tugged with all her might, but far from galloping, could scarcely move forward; she struggled with her legs, gasping and shrinking from the blows of the three whips which were showered upon her like hail. The laughter in the cart and in the crowd was redoubled, but Mikolka flew into a rage and furiously thrashed the mare, as though he supposed she really could gallop.

“Let me get in, too, mates,” shouted a young man in the crowd whose appetite was aroused.

“Get in, all get in,” cried Mikolka, “she will draw you all. I’ll beat her to death!” And he thrashed and thrashed at the mare, beside himself with fury.

“Father, father,” he cried, “father, what are they doing? Father, they are beating the poor horse!”

“Come along, come along!” said his father. “They are drunken and foolish, they are in fun; come away, don’t look!” and he tried to draw him away, but he tore himself away from his hand, and, beside himself with horror, ran to the horse. The poor beast was in a bad way. She was gasping, standing still, then tugging again and almost falling.

“Beat her to death,” cried Mikolka, “it’s come to that. I’ll do for her!”

“What are you about, are you a Christian, you devil?” shouted an old man in the crowd.

“Did anyone ever see the like? A wretched nag like that pulling such a cartload,” said another.

“You’ll kill her,” shouted the third.

“Don’t meddle! It’s my property, I’ll do what I choose. Get in, more of you! Get in, all of you! I will have her go at a gallop!…”

All at once laughter broke into a roar and covered everything: the mare, roused by the shower of blows, began feebly kicking. Even the old man could not help smiling. To think of a wretched little beast like that trying to kick!

“Two lads in the crowd snatched up whips and ran to the mare to beat her about the ribs. One ran each side.

“Hit her in the face, in the eyes, in the eyes,” cried Mikolka.

“Give us a song, mates,” shouted someone in the cart and everyone in the cart joined in a riotous song, jingling a tambourine and whistling. The woman went on cracking nuts and laughing.

… He ran beside the mare, ran in front of her, saw her being whipped across the eyes, right in the eyes! He was crying, he felt choking, his tears were streaming. One of the men gave him a cut with the whip across the face, he did not feel it. Wringing his hands and screaming, he rushed up to the grey-headed old man with the grey beard, who was shaking his head in disapproval. One woman seized him by the hand and would have taken him away, but he tore himself from her and ran back to the mare. She was almost at the last gasp, but began kicking once more.

“I’ll teach you to kick,” Mikolka shouted ferociously. He threw down the whip, bent forward and picked up from the bottom of the cart a long, thick shaft, he took hold of one end with both hands and with an effort brandished it over the mare.

“He’ll crush her,” was shouted round him. “He’ll kill her!”

“It’s my property,” shouted Mikolka and brought the shaft down with a swinging blow. There was a sound of a heavy thud.

“Thrash her, thrash her! Why have you stopped?” shouted voices in the crowd.

And Mikolka swung the shaft a second time and it fell a second time on the spine of the luckless mare. She sank back on her haunches, but lurched forward and tugged forward with all her force, tugged first on one side and then on the other, trying to move the cart. But the six whips were attacking her in all directions, and the shaft was raised again and fell upon her a third time, then a fourth, with heavy measured blows. Mikolka was in a fury that he could not kill her at one blow.

“She’s a tough one,” was shouted in the crowd.

“She’ll fall in a minute, mates, there will soon be an end of her,” said an admiring spectator in the crowd. 

“Fetch an axe to her! Finish her off,” shouted a third.

“I’ll show you! Stand off,” Mikolka screamed frantically; he threw down the shaft, stooped down in the cart and picked up an iron crowbar. “Look out,” he shouted, and with all his might he dealt a stunning blow at the poor mare. The blow fell; the mare staggered, sank back, tried to pull, but the bar fell again with a swinging blow on her back and she fell on the ground like a log.

“Finish her off,” shouted Mikolka and he leapt beside himself, out of the cart. Several young men, also flushed with drink, seized anything they could come across—whips, sticks, poles, and ran to the dying mare. Mikolka stood on one side and began dealing random blows with the crowbar. The mare stretched out her head, drew a long breath and died.

“You butchered her,” someone shouted in the crowd.

“Why wouldn’t she gallop then?”

“My property!” shouted Mikolka, with bloodshot eyes, brandishing the bar in his hands. He stood as though regretting that he had nothing more to beat.

**

Let me pair alongside Dostoevsky this marvelous quote from Carson McCullers:

But the hearts of small children are delicate organs. A cruel beginning in this world can twist them into curious shapes. The heart of a hurt child can shrink so that forever afterward it is hard and pitted as the seed of a peach. Or again, the heart of such a child may fester and swell until it is a misery to carry within the body, easily chafed and hurt by the most ordinary things.

In his Basis of Morality Arthur Schopenhauer wrote: The assumption that animals are without rights and the illusion that our treatment of them has no moral significance is a positively outrageous example of Western crudity and barbarity. Universal compassion is the only guarantee of morality. Ultimately Crime and Punishment will become a meditation on compassion but not before the moral failure of men, women, and life in public and private are measured by deliriums and sophistries of cruelty as yet unsurpassed in literature.

If you want to know a human being you must first examine his or her relationship to cruelty. Portraits of brutality in novels are in no small measure opportunities for tragic irony—He stood as though regretting that he had nothing more to beat. 

Now a friend of mine, who is paralyzed, who rides a wheelchair, has on more than one occasion crawled down the subway stairs in New York City—no mass transit system in the United States has less accessibility than the Big Apple’s subway system, for though there are a handful of station elevators in the city, they’re almost always out of order, or worse, they stink of urine and feces. Want to go to a job interview? Try spending hours looking for a way into the subway without getting shit on your wheels or shoes. Just try.

He crawled down the filthy steps, dragging his paralyzed legs. Commuters stopped and stared. Passengers were shocked. A cripple was actually working his way, hand over hand, rolling and gyrating down the stairs with a stranger behind him, carrying a wheelchair.

Many cripples have done this.

Cruelty happens by design, though it’s aided by superstition, or as Tom Paine said, it’s driven by the Bible. (“It is from the Bible that man has learned cruelty, rapine, and murder; for the belief of a cruel God makes a cruel man.”)

What do I mean when I say it happens by design?

The adoption of physical barriers is always a matter of indifference. Indifference is what I like to call the 80% rule of cruelty. Susan Sontag: “10 percent of any population is cruel, no matter what, and 10 percent is merciful, no matter what, and the remaining 80 percent can be moved in either direction.”

Erect a cruel building and you promote cruelty.

**

So one thinks of universal design as compassion.

How elastic compassion is!

Arrayed against compassion are the architectures of wantonness. Raskolnikov’s room.

Behind closed eyes one sees that room.

Confession: having lived in some bitterness, I fear the cruelties of human indifference more than anything in this world.

from “Letters to a Young Cripple” #4

Dear _______,

“Who the Hell am I?” you ask, as in “who appointed you to speak on behalf of anyone?” This is the best of all possible questions. I seized the talking stick long ago and you should feel free to grab it back any time you like. But don’t design to take it—plans are insulted destinies and one elemental aspect of cripple-talk comes from the marriage of impulse and necessity. Before you use your tongue, know whether it’s time to voice a requisite inclination.

It’s time for us to get close. For now let’s imagine we’re on opposite sides of a tiny island. It’s a Robinson Crusoe situation. I’ll be Friday and you can be Crusoe. Most would choose to be Crusoe I imagine—he has all the goods and boy does he ever have designs.

Older cripples, those who’ve lived some years before the Americans with Disabilities Act know something about emptiness. We grew up without Crusoe’s nails, drift wood, string, pulleys, guns, and whatever else he hauled away from his foundering ship. Cripple Island is, perhaps, not much of a place but Crusoe has accommodations, and moreover, like any son of industry he knows what to do with them. He builds little England.

Old Crips live in old haunts. In his new and exceptional memoir Hurricane Street Ron Kovic writes of life in the paralysis wards of the early 1970’s. Think “no civil rights” and without rights, think life without dignity—or better—the organization and assembly of life without dignity. Think horror:

Dr. M., the chief surgeon at the hospital’s Spinal Cord Injury (SCI) Center, walks past me. He is very tired but still he recognizes me and says hello. He has been in the operating room all day. His first patient, a paraplegic from D ward, had to have a flap put on his rear end for a bedsore that wouldn’t heal. There are a lot of them in here with that problem and sometimes the flap doesn’t take and they have to do it all over again. It can be very frustrating. Dr. M.’s second patient was not as lucky and had to have his gangrenous left foot removed. The nurses did all they could to save the foot but in the end they just weren’t able to. There are a lot of paralyzed guys around here with amputated legs. You can get a really bad burn and not even know it. I remember hearing a story once about a guy who came home drunk one night with his girlfriend and she filled the bathtub and placed him in it, not realizing the water was scalding hot. He got burned really badly and died the following week. There are a lot of stories like that and you try to never forget them. These are important lessons, and as horrible as it may seem, remembering them is crucial to our survival.

For nearly three months last year I was a patient here at the Long Beach VA hospital, healing a terrible bedsore on my rear end after a fall in the bathtub at my apartment. The accident happened not long after I had broken up with a woman named Carol who I first met at an antiwar demonstration in Los Angeles in the spring of 1972. Carol was the first woman I loved and the very first woman to break my heart. After we broke up I felt as if my whole world had fallen apart.

I was depressed and hardly getting any sleep at night. I remember putting a bandage over the bruise but it just kept getting worse. After a while the bruise became a sore and the sore an open wound, until finally I had to turn myself in to the hospital.

The last place I wanted to be was back in the Long Beach VA hospital. I hated the place. The conditions were atrocious, as bad if not worse than the Bronx VA in New York where I had been after I first came home from the war. The wards were overcrowded and terribly understaffed. The aides would sit in their little room at the end of the hall drinking coffee and cackling away as men on the wards cried out for help that never came. All the windows were tightly shut. The air was rancid, and I would push my call button again and again but no one would come to help.

The anger and frustration would build up inside me and I remember several times screaming into my pillow as I lay on my gurney until I was exhausted. I felt so helpless, so lost. During the entire time, in that depressing place, Carol never called or came down to visit me once. I felt abandoned, betrayed, and soon stopped shaving and began to let my hair grow long. I remember looking in the mirror one morning thinking how much I resembled Jesus Christ hanging from the cross. I thought back again to the Bronx VA when I had been stuck in that chest cast for nearly six months after breaking my femur, and how as I had lain on a gurney on my stomach I would paint pictures of the crucifixion with myself as Christ, and how they’d sent the psychiatrist down from the psych ward because they were concerned and I immediately stopped painting, afraid they would have me committed just like my Uncle Paul who had been beaten to death in a mental hospital years before.

For old crips there was always that need, a desperation to figure out how to live “for yourself.” Life was a terrifying mathematics—an algebra—part hope, part reaction, part belief. We’ll get somewhere with this chalk. Then they came and took the chalk away. “Chalk just makes you more hopeful,” they’d say. Accordingly old crips had to say, a la Beckett: “I can’t go on, I’ll go on.”

Maybe the better Beckett quote is: “Try again. Fail again. Fail better.”

Either way none of the Old Crips had prerogatives. If you expressed yourself in the wrong way the next stop was the mental hospital, make no mistake. One of the great backstories in American poetry is the fact that Allen Ginsberg’s iconic poem “Howl” represents his bold refusal to be quiet about the effects of forced institutionalization. (Ginsberg had been sent to a psychiatric hospital because of his queerness and his passionate intensity.) Yes, none of the Old Crips had “privilege”—unless screaming into your pillow can be understood as a private Theater of Cruelty.

Old Crips had to incorporate and gestate psychological, corporeal, and existential densities, literally hour after hour. In one of my college notebooks (written just three years after my own stint in a psychiatric ward) I copied these lines from Simone de Beauvoir:

Regardless of the staggering dimensions of the world about us, the density of our ignorance, the risks of catastrophes to come, and our individual weakness within the immense collectivity, the fact remains that we are absolutely free today if we choose to will our existence in its finiteness, a finiteness which is open on the infinite. And in fact, any man who has known real loves, real revolts, real desires, and real will knows quite well that he has no need of any outside guarantee to be sure of his goals; their certitude comes from his own drive.

 

This is the essential problem, often expressed to me by Old Crips: young cripples believe in an outside guarantee—for what after all is a civil rights law but a warranty, a certitude, a “writ” that should alleviate us from want? That is exactly what the ADA should be. That is precisely what it ain’t.

As disability rights activist Bob Kafka notes: “If we believed that ADA is the power and we are the recipients of its strength, rather than we are the power and ADA is a tool for us to use, I fear we may still have a long way to go.”

The ADA isn’t a warranty and worse, Old Crips will tell you, the power doesn’t reside there, just as it doesn’t reside in a hammer. The strength is in your mind. Easy enough to say, but harder to enact, especially if you believe there’s an ADA Geek Squad that will ameliorate the obstacles.

We like the ADA. But it hasn’t changed things as much as we’d predicted. If in fact we’ve a long way to go, read more tough people. Kovic’s new book is a good place to start.

 

 

 

 

Notebooks…1980

Don’t moan!

Just pull your hair

as I do—waltzing

in my head

with death

& a glowing point

straight before me…

**

Who appointed you? Nah. Forget Spinoza. I mean “who” besides your mother told you your thoughts are worth a damn?

“Well, when I was a boy the postman said I was smart.”

**

My face is a flag of surrender. I’ve cultivated it. My torso fights on…

**

Happiness crawls in and out of me like that childhood song about the worms and the corpse…

**

How beautiful to see we are still funny. Five friends and no one is selling anything. Though one of us who has lost a lot of weight lifts up his shirt and I say if he keeps this kind of display up, a piano will fall on him. The dog walks into the room with her dish clutched in her teeth. A five point buck looks in the window. Any moment now, Dr. Doolittle will drop by for coffee. We are just laughing animals. Save the human textbook for tomorrow.

**

Carl Jung thought the plants were talking to us. I’m with him.

**

I want you to understand me. I come from one or two regions beyond the blurry pasture. The dark pines are engraved with the bold eyes of my sleep. Here I am, new to this day. What should I do?