“Disability” News – Page 19 – Planet of the Blind

The FFALF Needs YOU!

The Fred Fay Advanced Leadership Forum (FFALF) seeks to identify proven leaders from the disability community and bring them together with pioneers from the disability rights movement and key current figures for an informal, comprehensive weekend aimed at giving participants the background, training, information and expertise to return to their communities and organizations and lead successful advocacy efforts for disability rights.

The goal of the FFALF is for the next generation of leaders in the disability rights movement from across the United States to get to know and learn from the current generation of leaders, and for them to strategize together about the future direction of the movement.

Nominees will have demonstrated strong vision and leadership ability by having either:

· improved the civil rights and delivery of services for people with disabilities.
· led disability rights actions that have achieved significant results.
· enhanced opportunities for people with disabilities to participate fully in all aspects of society.

Selected candidates will participate in an intensive, two day, all-expense-paid retreat in Boston on October 24 – 26, 2008, covering a wide range of subjects critical to the disability community. The Fred Fay Advanced Leadership Forum is presented by the Boston Center for Independent Living and members of the Advisory Council. National leaders of the disability rights movement and noted public figures will also take part in the FFALF.

Applications due by July 1st.

For more information:

Brochure

Application

Cross-posted on Blog [with]tv

On Being Alex Barton

Mrs. Marcia Cully
Morningside Elementary School Principal

Dear Mrs. Cully

My name is Stephen Kuusisto and I am blind. I was born blind in the mid 1950’s—an era when kids with disabilities were not encouraged to attend public schools. Because my mother was tough minded and persistent I went to the Oyster River elementary school in Durham, New Hampshire instead of the Perkins School for the Blind. Nowadays I make my living as a professor at the University of Iowa where I teach graduate and undergraduate courses in creative writing.

When I heard the story of young Alex Barton who was “voted off the island” known as Kindergarten because he has behavioral problems associated with an autism spectrum learning disability, and that accordingly his teacher and classmates were simply annoyed by his presence, well, aside from my natural incredulity that such a thing can still happen in the United States, I felt a flood of long repressed tears. You see, I was once a kid like Alex Barton.

I still carry deep under my skin the barbs and taunts of mean spirited public school classmates who found ways to bully me simply because of my disability. I wrote a best selling book about my childhood experiences called “Planet of the Blind”. That book has now been translated into 10 languages. I also host a blog called “Planet of the Blind” where I advocate almost daily for the rights of people with disabilities.

Like many “baby boomers” with disabilities who helped to pioneer the concept of mainstreaming for disabled kids I keep hoping that the vicious and ignorant behavior that I experienced in public schools will at last become a thing of the past.

So you can imagine my deep distress upon hearing the story of young Alex Barton and his teacher Wendy Portillo. I won’t belabor the point. I’m certain that your school district and school board has been hearing a good deal about this affair.

I simply write in this instance to say that unlike the media or those who would take sides on this shameful matter, I am grieving for Alex and his family. The history of disability features a long timeline of stigmatization and I know personally how hard it is to overcome the effects of ridicule and substandard teaching.

I wish you and your community good luck and good sense. I hope it’s not too much to ask that your school district will now take this opportunity to think hard about disability with a renewed sense that kids with disabilities are real citizens too.

As a final disclosure: I am posting this letter on my blog with the hope that I might hear from you in some affirming way. I’m sure we can agree that there are real lives in the balance.

Sincerely,

Professor Stephen Kuusisto
The University of Iowa

Holy Cow – would ya look at all these LINKS!

Disability and Language: a NY Times Article Review

This comment was left on a post by William Peace on his blog, Bad Cripple. Therextras wrote " Thank you for an excellent expose of a typical media dissemination of
language and attitudes we would like not only to reform but squelch. I
hope you sent some response directly to the newspaper."

Team [with]tv would like to second that remark.

Here is an excerpt from William’s post.

Monday, May 12, 2008

Disability and Language

Yesterday a long article appeared in the New York Times entitled
"Taking a Chance on a Second Child". The article was written by Michael
Winerip, a Pulitzer Prize wining writer. Mr. Winerip is a seasoned
reporter, graduate of Harvard University and a gifted writer. Yet a day
later I remain stunned and outraged by the language Winerip used. The
article in question is about Jordana Holovach, her son Jacob who is
severely disabled, and her decision to have a second "healthy" child.

The
tone of Winerip’s article is shocking. Each and every mention of
disability is overwhelmingly negative. The language is antiquated,
insulting, and devalues the life of a child and by extension all
disabled children and adults. Among the snippets I found particularly
appalling include the following:

In referring to Ms. Holovach’s son: "And as much as she loves that boy
and as hard as she’s worked to make him whole…she felt snake bit"

Ms. Holovach’s son is "confined to a wheelchair".

Ms.
Holovach’s son was responsible for her divorce: "Her first marriage
ended in divorce under the strain" and "Jacob was a big reason".

Before Ms. Holovach’s son was born "they were successful people" (note tense).

Oh don’t stop here. Keep reading, there is more….

Then stop by Patricia E Bauer’s blog for this additional link.

Cross-posted on Blog [with]tv

Iowa blind advocates (Steve being one of them) disagree over court ruling on paper money

Advocates Disagree…(click for complete article)

Updated May 20. 2008 6:04PM
By Diane Heldt
The Gazette
diane.heldt@gazettecommunications.com

A federal appeals court ruling Tuesday that paper money — indistinguishable by touch — is discriminatory to blind people was hailed by some advocates as a long-awaited step forward, while others said a change is unnecessary and plays into negative stereotypes about the blind.

Blind people have adapted and often fold money to distinguish the bills, but no longer would have to rely on others to help them if the Treasury Department makes bills of different sizes or prints them with raised markings, supporters of a change said.

"What’s at issue here is the ability to identify money without other people helping you," University of Iowa English Professor Steve Kuusisto, who is blind, said. "My view is, the most accommodations possible help the most people. To be opposed to accommodations that help people is narrow."

The American Council of the Blind sued for such changes, but the government has been fighting the case for about six years. The U.S. Court of Appeals for the District of Columbia ruling could force the Treasury Department to alter money, though the ruling is subject to appeal.

Continue reading “Iowa blind advocates (Steve being one of them) disagree over court ruling on paper money”

New Movie: Blindness

This from TheStar.com: McKellar, 44, is the screenwriter and co-star of Blindness, the
Canada-Brazil-Japan co-production chosen to open the 61st edition of the Cannes Film Festival…

Directed by Fernando Meirelles (City of God), the film is
an adaptation of Portuguese writer José Saramago’s Nobel Prize-winning
1995 novel about the panic and violence that follows an unexplained
epidemic of blindness. It was shot in Toronto and Brazil last summer.

It’s
the second time McKellar has come to Cannes with a high-profile film
about a global calamity. He was here a decade ago with Last Night,
his curiously upbeat directorial feature debut about the end of the
world. He admits it’s a strange fascination for a guy who had "a quite
placid North Toronto upbringing."

***

Blindness stars Mark Ruffalo and Julianne Moore in the lead
roles of a doctor and his wife attempting to come to grips with the
calamity. The supporting cast is loaded with Canuck talent, including
McKellar, Sandra Oh, Maury Chaykin, Martha Burns and Susan Coyne.

McKellar is hoping viewers will recognize Blindness as a film that deals in bigger ideas than just terrifying people.

"We
shouldn’t be scared of blind people. They’re not monsters. To me,
humanity is exposed when people are blind; they’re not dehumanized."

Blindness
is a more substantial film than the usual show-opener at Cannes, which
tends to be a lighter affair driven by stars who provide the desired
glitter on the red carpet into the Palais des Festivals.

"It’s a
good thing. (Cannes officials) are trying to change their image. I
don’t know how the Cannes audience will respond to the film, but,
hopefully, it still works on a commercial level or a thriller level,
while also having more to say."

It will certainly be interesting to hear what Steve has to say, now won’t it?

~ Connie

LINKS:

Thanks to Beth Haller of Media Dis&Dat. It was her post "Blindness" screenwriter says film doesn’t dehumanize blind people that brought this to my attention.

According to Pop Culture Buzz this movie is commercially scheduled for limited release in the United States on September 12, 2008.

A not-so-good review…

Another not-so-good review…

Blind professor helping UI students, doctors see disabilities in a new light

Steve Kuusisto, an English professor at the University of Iowa in Iowa City, Iowa, also has a joint appointment in the Carver College of Medicine as a "humanizing agent," helping educate doctors about disability issues. In this video, Kuusisto talks about his blindness, interacts with his students and discusses his current career ventures. GazetteOnline video by Michael Barnes.

LINKS:

Project 3000

UI contributes to gene therapy breakthrough for blinding eye disease

University of Iowa News Release

April 28, 2008

UI contributes to gene therapy breakthrough for blinding eye disease

Researchers
at the University of Iowa played a key role in a landmark gene therapy
breakthrough reported Sunday, April 27, in an online article in the New
England Journal of Medicine.

The study reported
improvement in vision following gene transfer to the retina in three
patients with an inherited form of blindness known as Leber congenital
amaurosis or LCA. The study was carried out at the Children’s Hospital
of Philadelphia by an international team led by the University of
Pennsylvania, the Children’s Hospital of Philadelphia, the Second
University of Naples and the Telethon Institute of Genetics and
Medicine (both in Italy), the UI and several other American
institutions.

This is the first report of successful gene
therapy of an inherited eye disease in humans. Although the patients
have not achieved normal eyesight, the preliminary results set the
stage for further studies of an innovative treatment for LCA and
possibly other retinal diseases. Patients’ vision improved from
detecting hand movements to reading lines on an eye chart.

Edwin
Stone, M.D., Ph.D., UI professor of ophthalmology and visual sciences
and a Howard Hughes Medical Institute investigator, led the genetic
testing portion of the study. Stone’s group developed a method for
distinguishing disease-causing mutations from benign genetic variants,
and this method was used to choose the patients who were treated in the
gene therapy study. The Iowa group also developed a highly efficient
nonprofit testing strategy that has allowed genetic testing for LCA to
be offered on a national scale.

"This is a very exciting
day for everyone involved in caring for patients with inherited eye
disease," Stone said. "We are very pleased that the Carver Lab at the
University of Iowa was able to contribute to this important step
forward."

Among those recognizing the breakthrough were
John and Marcia Carver, members of the family who donated $10 million
in 2005 to create and name the John and Marcia Carver Nonprofit Genetic
Testing Laboratory and the associated Carver Family Center for Macular
Degeneration at the UI. "We were very happy to hear of this
extraordinary scientific result and excited that the Carver Lab had an
important hand in it," John Carver said.

The UI is also home to Project 3000 (http://www.project3000.org),
a philanthropically supported grassroots effort to find all 3,000
people in the United States affected with LCA and to offer them a
genetic test whether or not they have insurance coverage to pay for it.

Project
3000 was created in 2006 by Stone, Derrek Lee, who is first baseman of
the Chicago Cubs, and Wyc Grousbeck, who is co-owner and CEO of the
Boston Celtics. Lee and Grousbeck have children affected with LCA.

Continue reading “UI contributes to gene therapy breakthrough for blinding eye disease”

Les Miserables, American Style

I begin with the premise that suffering is a commodity like everything else.

Now Wal-Mart wants their money back.

"Don’t kid yourselves, they wont make a ruckus in America," say the apparatchiks at Wal-Mart’s hindquarters.

She’s just a disabled woman who can’t go back to work and now that she’s won a minor lawsuit against the trucking company that left her brain damaged, let’s sue her to get that money since our corporate health care plan had to pay for her over the past three years. And what the heck, let’s sue the woman for more than she received in damages—who cares if she has to live in destitution. It’s only fair you see, because suffering is a commodity and we at Wal-Mart are always, always rolling back the prices."

I kid you not.

Wal-Mart trots out its public relations hacks. They have the hubris to argue that the solvency of their employee’s health care plan depends on putting this woman into bankruptcy.

Really.

Heck, this argument worked with the court.

What’s the difference between a Reaganite court and the Sermon on the Mount?

We no longer have to strive to alleviate suffering. We commodify it like everything else.

What’s my second premise?

It’s raining like mad in America.

Our ancestors stare mutely at us from inside every rain drop.

S.K.

LINKS:

Keith Olbermann Continues Feud Against Wal-Mart, Wal-Mart Responds

Wal-Mart Screws Up an Easy PR Problem

Latest on Shank Wal-Mart Story

Meet Debbie Shank…

[with]tv Launches New Radio Program for People with Disabilities…and everyone else!

A Different Perspective – Press Release

Coming Soon: a one-hour, weekly Internet Talk Radio Program entitled A Different Perspective set to premier on Webtalkradio.

A Different Perspective will be hosted by Howard Renensland, CEO of [with]tv: "a television channel of, by, and for people with disabilities…and everyone else" and PWdBC, a 501 c 3 dedicated to training people with a disability for careers in film and television.

To quote Mr. Renensland, “My experience of the past 23 years raising
and advocating for my daughter with disabilities has convinced me that
the single most debilitating factor limiting people with disabilities
is not their disability, but rather their image as portrayed in
mainstream media and the factors that contribute to that stereotypical
image. [with]tv will alter this situation by fully employing people
with disabilities in a mainstream media company where they, people with
disabilities, will control the medium and the message.”

A Different Perspective will present an
entertaining discussion of current issues from the perspective of
people with disabilities. Howard will, with the assistance of guests
and [with]tv volunteer reporters from the disability community, provide
this perspective intended for all listeners – not just those with a
disability. The ongoing progress of [with]tv, PWdBC, and the work of
the volunteers turning this vision into a reality will be discussed as
well.

Inquiries regarding advertising and corporate sponsorship are
welcome. A volunteer staff is seeking audio commercial placement along
with advertising and corporate sponsors for A Different Perspective, [with]tv, and PWdBC. More information can be found on on Blog [with]tv and on the web site.

Cross-posted on Blog [with]tv.

Get Involved: Convention on the Rights of Persons with Disabilities "Blog Swarm"

RatifyNow.org is "a
website to support the global grassroots efforts to ratify the
Convention on the Rights of Persons with Disabilities." There you will
find this announcement:

Blog Swarm!

Calling all bloggers and writers! On March 30,
2008, the RatifyNow.org site will be host to the RatifyNow CRPD Blog
Swarm 2008! If you’re reading this page, chances are, you care
passionately about disability rights. This is your chance to get on a
soap box and tell the world what the international disability rights
treaty (CRPD) means to you! Learn how to get involved.

If you are not a blogger, you too can be involved. Simply forward your essay/comments to a blogger, here for instance, to have your thoughts be heard.

Cross-posted on Blog [with]tv and Crimes Against People with Disabilities