Halls of Shame?

My friend and colleague, Scott Lissner, the ADA Coordinator at The Ohio State University, sent me the following excerpt and link concerning a student with autism who was so discouraged by his treatment at college that he felt compelled to share his experiences publicly.  I wish that some 17 years after the passage of the ADA that students with disabilities felt better about pursuing a higher education in the U.S. but unfortunately the story below remains all too common.  Many colleges do not see disability as being an important part of campus diversity initiatives.  This is of course ironic since disability as a condition affects one in four Americans.

Steve Kuusisto

Here is a link to a piece written by a 19-year-old CUNY student with aspergers that might be of interest http://www.wiretapmag.org/education/43008/

"As I walked home through Central Park one afternoon — having been expelled from Hunter College’s Manhattan dorms that morning — I was so emotionally drained that even the bare trees seemed vivacious by comparison. During my two months as a resident student I’d lost 15 pounds, slept maybe five hours a night, and had constant, vivid, flashbacks of my many humiliations. I spent my days as tense as a hunted animal, fearing the scornful gazes of students who shunned me like they would a person who’d committed a heinous crime. My self esteem was shattered; when enough people look at you with disgust, it’s hard not to see yourself as disgusting. As for why? The best answer I have is that, in this era of tolerance, on a campus where the mere mention of racism elicits anger, I was guilty of being different from my peers.

My most marked difference from the other students is labeled "Asperger’s Syndrome" (AS). …"


Assistive Technology, World Wide

News release:

United Nations


UNITED NATIONS, 20 March 2007 — The many ways information and communication technologies (ICT) can improve the lives of persons with disabilities will be the topic of a meeting taking place at United Nations on Monday, 26 March.

At the first Global Forum of the UN Global Initiative for Inclusive ICT, disability advocates and leading experts from around the world will come together to assess the status of accessible and inclusive technologies for persons with disabilities. As the Convention on the Rights of Persons with Disabilities opens for signature on 30 March (see http://www.un.org/esa/socdev/enable), participating corporations will showcase their latest innovations in the field of inclusive technologies.

Speakers include Laura Ruby, Director of Policy and Standards, Microsoft; Victor Tsaran, Accessibility Program Manager, Yahoo Corporation; David Dikter, Executive Director, Assistive Technology Industry Association; and Axel Leblois, the Global Initiative’s Executive Director.

Emilie McCabe, General Manager, IBM Global Public Sector, will deliver the keynote address. Prof. Peter Brecke, of Georgia Tech’s School of International Affairs , will present the Digital Inclusion Index for Disabled Persons, which measures countries’ level of inclusion from the standpoint of ICT.

“The forum will examine how best to support the development of accessible and assistive features for ICT products,” said Sarbuland Khan, Executive Coordinator of the UN Global Alliance for ICT and Development. “There are core areas of opportunities, as well as specific funding and research and development resources which industry could benefit from”.

Morning panels will examine the scope for ICT industry of developing inclusive products and services, the pervasive impact of ICT on the lives of persons with disabilities, current research to reduce accessibility gaps among common ICT products and successful applications regarding the workplace, home, media, e-government and public services.

Afternoon panels will address how to harmonize and standardize accessible and assistive technologies to make them work on a global scale, as well as the role of the public sector in fostering innovation and compliance through legislation, regulations and procurement rules.

The forum is organized by the UN Global Alliance for Technology and Development and the Boston-based Wireless Internet Institute in cooperation with the Secretariat of the Convention for the Rights of Persons with Disabilities.

For information, please visit http://www.g3ict.com/ and http://www.un-gaid.org or contact Enrica Murmura at the Global Alliance secretariat, tel: 212 963 5913, e-mail: murmura@un.org or Edoardo Bellando, Tel. (212) 963-8275, e-mail: bellando@un.org,. 


Farewell to a Friend of Thousands

My wife Connie called me last night from New Hampshire where she’s visiting family to report that she had just read an obituary of Judge Richard Casey in the Manchester Union Leader. Connie and I knew Judge Casey from our time working together at Guiding Eyes for the Blind, in Yorktown Heights, New York. Judge Casey was both a graduate of Guiding Eyes, and a top notch Manhattan attorney when Connie and I first got to know him. He was also in those years an energetic member of the board of directors of Guiding Eyes. Dick Casey was in fact such an extraordinary attorney and public servant that President Clinton nominated him to serve as a Federal Judge in New York.

I will always know Dick Casey as the man who worked tirelessly to promote Guiding Eyes for the Blind. After going blind in mid life, Dick went forward with a dog from Guiding Eyes and found the benefits of mobility and the corresponding confidence that comes with having a professionally trained guide dog. In turn he put his considerable energy into serving the guide dog movement by serving on GEB’s board of directors and he worked tirelessly to help the guide dog school raise funds that will assure that any blind person who wants a guide dog can acquire one "free of charge".

The newspapers will talk about Dick’s extraordinary legal career which saw him presiding over several important cases and that’s appropriate of course. But I want to say in the "blogosphere" that Judge Casey’s philanthropic work on behalf of the blind will always be significant because it will go forward and benefit thousands of lives to come.

We have lost a tough guy who had a secret, soft heart, though he wouldn’t want the word to get out. Our hats are off and our prayers are for Richard Conway Casey and his family and friends.


On Writing Nonfiction

A few weeks ago I was speaking at Grinnell College in Iowa and I read aloud from two books of my own creative nonfiction. When I was through with the dramatic part of the presentation I encouraged the students and faculty in the audience to pepper me with questions. One young man asked me if I "minded" being identified as a "disability writer".

I had to admit that I’d never thought of myself in precisely those terms. I could add that I’ve never thought of myself as "a five foot seven inch tall writer" or "a thinning hair writer" though as identity groups these might not be so bad. (I should look up the respective heights and pate conditions of the great nonfictionists throughout history. How tall exactly was Montaigne? What kind of hair did Samuel Pepys have?)

I told the student that in all honesty I don’t think there’s a distinction to be made between literary writing and what he was calling "disability" writing since in point of fact all novels for instance are essentially in some way about the body. I mentioned Hemingway’s "The Sun Also Rises" and Melville’s "Moby Dick" as two major examples of novels that are about deformity and illness. "Can you name a novel that isn’t in some way about the life of the body?" I asked him.

Continue reading “On Writing Nonfiction”

Stop on By

If you are in the Columbus area on April 5 I urge you to stop by the campus of The Ohio State University for the event described below. Mental illness is one of the most complex disabilities and I’m a admiring fan of the self-advocacy movement that today’s college and university students have been developing across the nation.



Understanding and Advocating for People with Mental Illness

Short Video and Discussion led by

OSU Counseling Center and NAMIOhio

Thursday, April 5, 2007

5:15-7:30 pm

Refreshments Provided!

Room 14 in Psychology Building

If you wish to request accommodations for a disability or

have questions regarding the student chapter of NAMI,

please E-mail Lisa at carvitti.3@osu.edu for more information.

NAMI on Campus affiliates are student-run, student-led organizations providing mental health support, education, and advocacy in a university or college setting.

Their mission is to improve the lives of students who are directly or indirectly affected by mental illness, increase the awareness and mental health services on campus, and to eliminate the stigma students with mental illness face.

Check out www.namiohio.org to see how NAMI is helping Ohio.

Tap, Tap

I walk with a guide dog for the blind most of the time. Some days I travel without him. I tap the pavement with a long white stick.

Once, in Dublin, Ireland, I worked my way through the long airport and swept my cane before me and a woman grabbed me by the arm without warning.

"Where do you want to go?" she asked. She was wearing serious perfume.

"I want to go to Paris," I said.

"Oh," she said, "that’s where I am going!"

"Ah," I said, "but I don’t want to go to Paris today."

"Why not?" she asked. She was still clutching my arm.

"Because Paris is the city for restlessness," I said, "and I am not restless."

We were standing in a crowded Irish airport and for a moment we were perfectly still.

"Today," I said, "I am headed for the sea where I will become actual, sharing the form of motion."

She let me go and walked away, lost in her own body of thought.


Welcome to the Blogosphere!

For the better part of the past twenty years Simi Linton has been one of the most influential and effective public intellectuals in the field of disability studies in the United States.  She has also been a tireless advocate for disability arts.  Her book "Claiming Disability" is a groundbreaking text in the field of disability studies and her recently published memoir,  "My Body Politic" is a captivating view of a life of engagement as a scholar and artist. Now she has entered the blogosphere and I want to urge readers to visit her site and learn more about her public workshops and her views about where things are trending in disability arts. I want to add that I’m teaching both of her books in my spring quarter graduate workshop in disability studies at The Ohio State University and I will be directing my students to her site without delay.

Welcome Simi!

Visit her blog at:



Better yet, you can now find her on our blog roll.  "Disability Culture Watch" is her link…

School Controversy in Columbus

Some days the sheer volume of the injustices one sees either globally or locally is enough to drive one into numb silence.  The list is long and includes the fact that the U.S. routinely executes innocent people; across the United States children are battered in foster care and as if that isn’t bad enough, some forty million children are living without health insurance; our troops are fighting a war on two fronts in the Middle East and are not receiving appropriate medical care when they return home; people with disabilities remain unemployed in the U.S. in staggering numbers; people who are blind or visually impaired remain unemployed at a 70 per cent rate; the "list" as I say, is terribly long and I haven’t even gotten to the issues of U.S. sponsored terrorism and our nation’s complicity in human rights violations around the globe.  I am mindful that the "list" as I’m calling it is very long indeed.

When yesterday I read the article referenced below in the Columbus Dispatch about the anger from some deaf "alumni" of the Ohio School for the Deaf at the proposed merger of the deaf school with the state’s school for the blind I was flat out "gob smacked" into temporary silence.  I simply passed the article on with the assertion that I was trying to "count to ten" because it’s good to take thought for one’s anger and we all know this from kindergarten.

Here is the problem as I see it.  I will now stir the slum gullion with a stick:

Some deaf people do not see deafness as a disability; they see "it" as a culture.  The reasoning is sound: deafness has its corresponding and entirely original sign language.  If everybody learned sign language, the reasoning goes, then deafness wouldn’t be a disability at all.  It would just be another form of human difference like, say, being French or Latvian is a form of cultural diversity .

Proponents of the above view are as various in their temperaments and their respective emotional intelligences as any other artificially created human group–if you collected all the taxi drivers in New York City you’d have around 20,000 citizens who hail from every ethnic and national group on earth and who hold distinct views on just about any issue you could imagine.

But some of the people who hold the "deafness is a culture, not a disability" viewpoint are remarkable for their disdain both for other deaf or hard of hearing people and for people who have other kinds of disabilities.  I wish this wasn’t the case.  I am always stunned by the capacity of human beings to engage in discrimination against other human beings, whether the subject is Rawanda or a local school playground.

I believe in the broadest possible sense that in most cases "no one" should be thought of as having a disability.  If you give people the proper tools and opportunities most "disabilities" are merely structural or architectural or attitudinal.  That’s my general view of the matter.  The very word "disability" became widely used in the 19th century and was meant to designate people who were essentially injured on the job and who in turn could no longer work in the factories of the Industrial Revolution.  It will surprise no one to learn that I don’t think the "D" word is appropriate these days.

But contempt by a small group of deaf activists for their historical relationship to the "disability" word is now in many instances misdirected by those same activists toward disdain for others who have physical impairments.  One is reminded of the ranking that has taken place within other historically marginalized groups: the hierarchy of "blackness" as a social scale within the African-American community comes to mind; the initial unwillingness of "wave one" feminists to include working class or ethnic women in their cause; even today on university campuses one sees how the discussion of "diversity" in higher education often leaves out disabled people.

Contempt is generally an economic issue even before it becomes a question of religious intolerance or ethnicity.  In the film "Gandhi" starring Ben Kingsley there is a marvelous scene in which Gandhi must scold his upper class wife who does not want to do the menial labor at the ashram.  The point is that as an upper class Indian woman Gandhi’s wife finds it intolerable to be seen raking a latrine pit since such work is the labor reserved for "untouchables"–those people who are at the lowest end of the caste system.  Gandhi tells her that "everyone will rake the latrine pits" and that henceforth there is no longer a caste system.  It is, as I’ve already said, a beautiful scene.  Human freedom cannot afford a caste system.  Freedom is for everybody.

The problem isn’t that some deaf activists want to be thought of as a cultural group, a collection of people who have their own language, who are not at all disabled.  The problem is that by wanting to disassociate themselves from a historical relationship with disability these deafness advocates are overtly contemptuous of other people who would quite likely love to declare themselves no longer disabled but who find themselves genuinely struggling with serious physical and social obstacles.  I would love to say that blindness isn’t a disability but currently it is certainly a profound employment obstacle and the issues that are associated with this are both economically determined and are additionally rooted in historical attitudes that Mrs. Gandhi would likely recognize.

Contempt for the blind emerges in this instance with the force of a geyser.  The reasoning works like this: deaf people are not disabled; to put them into a facility where they would have to share space with people who really are disabled would be demeaning to deaf students.

My response to this is that specialized schools for people with disabilities should quite likely no longer be necessary if we are serious in America about making public education accessible to every student.

But let’s leave that issue for the moment.

My real feeling is that if deaf people are not disabled and are essentially a cultural group, then why should they have a school that’s funded by the public?  I think this is a fair question.  The public doesn’t fund specialized schools for kids who want to learn French or Latvian, as noble as those pursuits might be.  Why should deaf people have any public funding at all if they don’t have a disability and if they don’t even want to be seen in the same place as those who do have disabilities?

The answer to this question is that of course deafness is a disability.  You can decide later in life that you are unwilling to be a member of any group that would have you, as Groucho Marx once famously said, but that’s an adult position.  Learning sign language and alternate technologies is an important, even crucial thing for deaf children, just as learning Braille or computer skills or orientation and mobility skills is central for blind children.

In order to learn discrimination we have to foster discrimination and that’s what is so troubling to me about the rhetoric of some of the activists in the deaf community.  It’s worth pointing out that these same folks dislike partially deaf people; they don’t like people who get Cochlear Implants, they don’t even like people who aren’t fluent in sign language.

My argument for them is simple: start your own cultural organization.  Go on out and do the fund raising like other groups do.  You might find the process rather interesting.  You might have to talk to people even if it isn’t in your own language.


In Our Own Backyard, No Less

This article in the Columbus Dispatch highlighting the attitudes of some deaf alumni of the Ohio School for the Deaf about a proposal to merge Ohio’s schools for the deaf and for the blind, deserves further comment.  But I have to count to TEN and that could take me a while.  You’ll understand when you read this: 

Campus for deaf, blind opposed
Alumni fear social, safety issues if state schools share space

Monday, March 19, 2007
Simone Sebastian

Continue reading “In Our Own Backyard, No Less”

On Being in Good Company

If you visit Lance Mannion’s blog you’ll see that Mr. Mannion has placed me in the company of the poet Tom Lux in the "personal poetry preference" department.  I am all agog and aquiver because I adore the poems of Tom Lux and I’m just sufficiently a kid-minstrel that I am unabashedly giddy with beanie rotating pleasure at being handed such a fine paper flower.

I am posting a poem I wrote about western New York State, a place that Lance Mannion knows well:

The Jazz From Cripple City

I saw tonight four men in wheelchairs eating

Flowers And laughing through the dusk

While in the public gardens

Forsythia leaned to the water.

O to bear up under such rollicking measures…
O to live in Baffalo, New York and eat civic plantings…

Yes I wasn’t alone before this poem began:

Yes, it’s true, I can’t see a thing.

A friend had to tell me about the men who ate from the rhododendrons.

Her description was full of detail, let us say, as

The courts are full of law,

As Doc Williams might have said.

But no one can describe the murmurous laughter that does not
Alter the case.  & the twilight full of sounds…