Author: stevekuusisto

There’s a prevaricating article in this morning’s New York Times about Victoria Arlen a Paralympic swimmer who has been ruled ineligible for competition because its possible her disability may improve. What’s missing from the piece and the concurrent debate with officialdom is that disability is not a medical condition (though diagnoses play a role) but rather a series of constructed obstacles. I am blind but with the proper accommodations I’m capable of achieving many goals. Ms. Arlen is currently severely impaired and capable of swimming in the Paralympic competitions, save for the odd shilly-shallying from medical experts who say she might conceivably improve–that her disability is therefore not permanent. Well forgive me for barking! Life isn’t permanent. Able-bodied-ness isn’t permanent. My blindness may not be permanent. What with the remarkable research with stem cells my friend L may discover her multiple sclerosis isn’t permanent.

Using the logic of the Paralympics, able bodied people shouldn’t be allowed to compete in able-bodied sporting contests because their physical conditions are not guaranteed.

Maybe in five years Victoria will be running across Nebraska without a disability. But she’s got a disability today. She will have it tomorrow. Shame on the Paralympics for relying on 19th century ideas both about medicine and disability.

Posted with Blogsy

I remember the milk man coming to our door, circa 1960. Blind kid and strange man with white coat. I feared he was a doctor. Blind kid who had been in hospital plenty of times already by the age of 5. “Ding Dong!” Its the doctor. Talk about a melancholy breakfast, eh Larry Rivers? 

This was in mind, as Lance Mannion told me about the butter sculpture at the New York State Fair–many years ago mind you–but his own son, then around five, saw a vast butterized statue of a milk man and, hearing that back in the day such a figure really existed, opined that his father was pulling his leg. Who would dress up like a doctor and deliver milk? 

Perhaps I’m also in mind of this theme–the ersatz doctor–because tomorrow I will be a respondent when my colleague Bill Peace delivers a paper at Columbia University on the notorious Dr. Kevorkian. The nexus of unconscious figurations is fair amazing: man in white coat and driving a funny van pulls up to your house. Old joke from Jay Leno: “Do you suppose when Santa Claus visits Dr. Kevorkian’s house he tries the milk and cookies?” 

Scary ersatz doctors, frightening “faux” bio-ethicists, maybe toss in Ingmar Bergman’s “death” from the Seventh Seal… 

I’m taking a stab against nostalgia. I think its good the milk man is now a mythology in butter. 

NEW YORK, NY (September 23, 2013) — Underlining the urgency for the United Nations to adopt a post-2015 development agenda inclusive of persons with disabilities, the CRPD 2013 ICT Accessibility Progress Report includes the latest data measuring the degree to which 72 States Parties are implementing the accessibility provisions of the Convention on the Rights of Persons with Disabilities (CRPD). 

A second critical gap, which speaks to the role of persons with disabilities in the implementation of the CRPD, involves the support of DPOs. States Parties’ policies are inconsistent with Article 4 (i) 3 of the CRPD and reflect a lack of respect for the participation of persons with disabilities: About 67 percent do not offer financial support for DPOs and NGOs for their work in developing policies and programs.  Yet, regression analysis across 72 countries data sets reveals that the participation of persons with disabilities is a common denominator among countries with the most successful ICT accessibility implementations.      

A third vital area of information and ICT accessibility related to the CRPD, and which remains low among surveyed countries, involves awareness raising and capacity building for persons with disabilities and key stakeholders. While 53 percent of the countries promote awareness-raising and training programs about the CRPD, a mere 10 percent provide mandatory training programs for future professionals about digital access for persons with disabilities;

This is inconsistent with Article 8 of the Convention and reflects a lack of understanding of the relationship between digital access rights and the capability of countries to engage in capacity building and inclusive development efforts to reflect CRPD dispositions.

Knowing how much progress is actually accomplished by CRPD ratifying countries in ICT accessibility is an essential step for all stakeholders in order to address gaps and opportunities in their own countries. While most countries are generally aware of their basic obligation to implement ICT accessibility, they have not: (1) translated essential CRPD dispositions into actual policies or programs, and (2) included persons with disabilities in the foundational countrywide policy development processes and capacity-building necessary to achieve valued outcomes.  As a result, more than one-fifth of the world’s population may be vulnerable to a digital divide.      

Axel Leblois, President and Executive Director of G3ict said: “This 2013 edition of the CRPD ICT Accessibility Progress Report, which covers two third of the world population, documents critical global gaps in ICT accessibility. Those facts call for the United Nations post-2015 agenda to incorporate ICTs as a critical success factor for the inclusion of persons with disabilities.”

Each of the critical areas of the Convention cited above present opportunities for improvement by ratifying countries, particularly in relation to their capacity for implementation and involvement of persons with disabilities and other stakeholders.  Bridging those vital gaps requires more than Governments work and resources. It requires a long-term partnership between the public sector, industry, DPOs and NGOs.

Overview and Methodology | List of Participating Countries | 2013 Summary Tables

The full report, with detailed data and analysis, will be available as a free download on the G3ict and DPI websites by November 15, 2013.

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About G3ict

G3ict – the Global Initiative for Inclusive Information and Communication Technologies – is an advocacy initiative launched in December 2006 by the United Nations Global Alliance for ICT and Development, in cooperation with the Secretariat for the Convention on the Rights of Persons with Disabilities at UNDESA. Its mission is to facilitate and support the implementation of the dispositions of the Convention on the Rights of Persons with Disabilities (CRPD) promoting digital accessibility and Assistive Technologies. Participating organizations include industry, academia, the public sector and organizations representing persons with disabilities. G3ict organizes or contributes to awareness-raising and capacity building programs for policy makers in cooperation with international organizations, such as the ITU, ILO, UNESCO, UNITAR, UNESCAP, UN Global Compact and the World Bank. In 2011, G3ict launched the M-Enabling Summit Series to promote accessible mobile phones and services for persons with disabilities in cooperation with the ITU and the FCC (Federal Communications Commission). G3ict produces jointly with ITU the e-Accessibility Policy Toolkit for Persons with Disabilities (www.e-accessibilitytoolkit.org), as well as specialized reports which are widely used around the world by policy makers involved in the implementation of the CRPD. Visit www.g3ict.org   

About DPI

Disabled People’s International (DPI) is a dynamic grassroots global organization headquartered in Canada, with five Regional Development Offices in Africa, Asia, Europe, Latin America and North America and Caribbean, operating in three official languages: English, French and Spanish. Established in 1981 and granted ECOSOC (United Nations Economic and Social Council) status shortly thereafter, DPI has 134 National Assemblies (country organizations) of persons with disabilities worldwide. Since its inception, DPI has collaborated with the United Nations (UN), civil society, governments and disability-related organizations to produce and disseminate information on disability worldwide.  DPI supports persons with disabilities around the world in their efforts to realize their human rights. It does this by promoting the full participation of persons with disabilities in all aspect of their community and by encouraging the equalization of opportunities and thereby, outcomes for persons with disabilities. Visit www.dpi.org

From the UN:

23 September 2013 – The rights of persons with disabilities must be directly addressed by the post-2015 development agenda, United Nations officials told world leaders today, urging them to adopt national and international policies that enhance and promote disability-inclusive development.

“Disability is part of the human condition; almost everyone will be temporarily or permanently impaired at some point in life,” Secretary-General Ban Ki-moon said at the General Assembly’s High-level Meeting on Disability and Development.

See full article here.

Bonding with a guide dog differs from pet love–though not because of love. All around us we see men and women who love their dogs, and children too. The little girl who lives next door has dressed her Labradoodle in her mother’s clothes–shorts and a blouse. The dog is bounding up and down the lawn–being herself–fully alive–wearing the garments of sad adulthood without reflection or displeasure. And the girl is laughing so hard she has to lie down in the grass. 

Pet love is a form of resilience.  Dogs cheerfully keep us going. “By your leave,” says the dog, “I will be the weight in your clock, steady, standing with and against gravity.” Don’t kid yourself–dogs know how to say these things. And sometimes they just dance around in your mother’s beach clothes. 

Bonding with dogs can be silly. I dislike those cable television dog trainers who pretend for profit that creating a well mannered dog is like going to church. Dog training is really nothing more than a loving game and anyone who says otherwise is out for easy money. 

A loving game. But as I’ve said, guide dog bonding is a different form of love. 

At Guiding Eyes trainer Y shows a young man from the Bronx how to throw a long rope with a rubber pineapple attached. The student in question has never been out of the Bronx. Just think about that. Y is showing him how to play with a dog. 

How do you teach a person to play? Give him a dog and a pineapple attached to a rope.

Y tells Malcolm to pretend he’s fishing. “Just reel your dog in,” she says. Malcolm’s dog is an enormous  yellow Lab named “Herc” as in Hercules, and he’s got the pineapple and he’s running circles around a very large room–growling in a canine version of giggling, his paws scrambling on the tile floor. He’s canine electricity, all juice. “Just reel him in,” Y says again, and Malcolm grabs his end of the rope and puts his back into it. Herc raises his head, surmises the rope’s slack is disappearing, and takes up a lion’s crouch and times the moment of tension perfectly and yanks Malcolm forward–about a yard forward–and suddenly the man is laughing. He’s laughing in a new way. It doesn’t mean he’s never laughed before. It means he’s never laughed with a dog. He’s never laughed with a dog that’s already walked him through traffic with excellent results. He’s never laughed with anyone who he could trust and who also hungered to be silly.

I was riveted when I read the following this morning:

“From a fetid, foot-long rod of earwax, extracted from the skull of a dead blue whale, scientists have unspooled an in-depth life story of one member of the largest mammals on earth. These waxy diaries could give marine biologists a new way to study the lives of a free-swimming species, and a window into the health of the ocean at large.

"It might be the only life history of any free-ranging animal," Stephen Trumble, a marine biologist at Baylor University, told NBC News.”

You can read the full story here.

I must admit this isn’t news–I mean, leaving aside marine biology, I’ve always known ear wax is really a museum. I’m deaf from wax and devote gobs of time to private, archaeological explorations of wax, my cerumen, my greasy private journal. 

Here’s a tipple from 1982 whispering of the Strindberg Cafe in Helsinki where I spent a wintry day reading Spinoza. Spinoza it turns out is a major cause of ear wax. Oh, and here’s wax from a brief visit to the Greek island of Santorini where I befriended a pelican. I can find everything I need to know about myself from knots of deafness. And I’m a free ranging animal. I’ve left my wax in the Baseball Hall of Fame and the Golden Temple of Kyoto. I once dropped some in Yankee Stadium–the old Yankee Stadium–the one Steinbrenner tore down so he could build the George Mahal. And ear wax in Venice; Tallinn; Berlin; Kingston, Jamaica; Osaka; Los Angeles. Place my orts under a miscrocope and you’ll find I wandered like a good whale, krill seeking, mis-hearing songs. 

Oh my sisterly and brotherly whales! So wild a sea! And stretching over Sado Isle, the Galaxy! (Basho)

Morning. Rustling leaves. Apples on the ground uneaten by the deer and my father in his grave my mother in hers and my brother also–and by the stars, not god, I flex my hands–by the atomized dust of creation I stand up in the early light and prepare.

My guide dog knows more than I about this moment. I’m trapped in the solo gravitation of my thoughts, seeing the day to come. I’m pondering a business suit–how I have to don it–and wear disagreeable shoes–and then I will pose as an alert grownup all day. 

All moments are elastic and un-cinctured. Dogs know. Just now its tug of war time. And what a relief! My blue, pin-striped suit disappears in the fog of memory and I hold a wet rope and a Labrador drags me three feet across the floor. I growl because that’s what you do when you’re being dragged. There’s joy down here in the lizard brain. We were in danger of forgetting it.

Well, not “we” of course. I was in danger. I was thinking of the future perfect with ablative nuance. My dog was swinging a rope. 

“Before you get too comfy,” she says, “Let’s tear something apart!”

**

Everyone knows dogs bring us joy. I think they’re transmission engines. They push us from customary thinking into liminal space if you let them. You must see in your dog an intelligence equal to your own, though its more selective. Dogs are superbly critical and discerning. People tend to think of them as cartoon-ish “will-o-the-wisp” happy wanderers, drawn by smells, motions and appetites. But dogs read us. I think they read us in a Hebraic way, from right to left and from the back of the book. Dogs think of us as creation mysteries. They scrutinize the delicate motions and little frowns and sidelong glances of their human partners and see that its time once more to rejoice in the garden and the two-leggeds need to be dragged into the light. 

I was “unfriended” by someone on Facebook last night because I dared to assert that using blindness as a metaphor for stupidity is insulting. This person was pissed off because a school district in Ohio is trying to eliminate books by Toni Morrison from school libraries–a fascist enterprise to be sure and one that’s contemptible as all fascist enterprises are. I completely understand  the woman’s rage. But when I read blind and ignorant in the same trope, I needed to say it: guess what? You can’t say that anymore. People with disabilities are real, we have dignity, we are part of the village, we sit at the table, and we’re not deficient. The woman who unfriended me is African-American. She is no doubt a kind and decent soul who’s as frustrated as we all are at the rising Mr. Rushmore sized faces of cruelty and intolerance we witness in this country every day. Yet even in our rage we must have emotional intelligence. Otherwise we do the work of late-stage Capitalism, which wants us to separate and undermine all opposition. Our job, here in diversity-ville is to presume competence. Who was lame? Theodor Adorno. Who was crippled? Frida Kahlo. Who was in the closet? James Baldwin. Who was deaf? Beethoven. Who had bi-polar depression? Abraham Lincoln. Who was crippled? Franklin Roosevelt. Who was deformed? Alexander Pope. I could go on and on. Some days I feel as though I have to.