Planet of the Blind

Congrats - and thank you - to Cindy Leland

Cindy purchased a copy of Stephen Kuusisto's new book, , "Letters to Borges", and saved $ by taking advantage of the pre-order price. In so doing, she also entered a random drawing and is the winner this week of an autographed copy of "Only Bread, Only Light", Steve's first book of poetry (Copper Canyon Press).

Will you be next week's winner?

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Professor Stephen Kuusisto is the author of “Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir “Planet of the Blind”, a New York Times “Notable Book of the Year”. His second collection of poems from Copper Canyon Press, "Letters to Borges", is scheduled for release in October 2012.  In addition to giving literary readings, Steve speaks widely on diversity, disability, education, and public policy. www.stephenkuusisto.com

The Barefoot Review seeking submissions

Jamie Sue, from The Barefoot Review, made contact and asked us to share the following post. Happy to do so...

What is it?

The Barefoot Review is a new publication. We welcome submissions of poetry or short prose from people who have or have had physical difficulties in their lives, from cancer to seizures, Alzheimer’s to Lupus. It is also for caretakers, families, significant others and friends to write about their experiences and relationship to the person.

What's the Purpose?

Writing can be a tremendous source of healing and allow difficult feelings and ideas to be expressed. Unfortunately, every piece submitted can't be published, however every piece is important. The process of writing, verbalizing feelings that may be subconscious or unexpressed is more important than the acknowledgment of publication. We hope sharing this work online will help people facing similar difficulties find inspiration in the words of others.

What's in a Name?

The Barefoot Review is named to evoke several meanings: baring your soul and expressing naked feelings. Bare feet ground you, give you balance, and connect you to the Earth. The review is here from a desire to help others.

Where is it?

The review is here, there and everywhere —www.barefootreview.com Please be sure to read the submissions guidelines before sending us your work. [email protected] Question, compliment or complaint? [email protected]

Our own "Team Project 3000" riding in RAGBRAI

Team Project 3000 will take off tomorrow morning to cross the state of Iowa and to raise awareness on behalf of Project 3000 and Leber congenital amaurosis.

Read more...!

RAGBRAI for a cause: Project 3000 Seeks Cure for LCA

Paul Rosenthal's Page for:
PROJECT 3000 SEEKS CURE FOR LCA

Dear Friends,

You can help us find a cure for blind children!

Chicago Cubs star Derrek Lee and Boston Celtics CEO and co-owner Wyc Grousbeck -- in partnership with the John and Marcia Carver Nonprofit Genetic Testing Laboratory at The University of Iowa -- are combining their talents and energies to eradicate an inherited form of blindness that has touched both of their families, Leber congenital amaurosis or LCA. They call their effort Project 3000 because a central part of their plan is to find every man, woman, and child affected with LCA in the United States -- about 3,000 people.

I will be riding my bicycle 475 miles across the state of Iowa July 19-25, along with several other friends and supporters of Project 3000, as part of RAGBRAI, the Register's Annual Great Bike Ride Across Iowa. To give some additional meaning and purpose to a ride that is sure to be fun, the cyclists on Team Project 3000 and I invite you to support the crucial work of Project 3000 at The University of Iowa.

Feel free to make a gift of any amount you wish. If you would like to make a per-mile-ridden gift, please take the amount per mile you wish to give and multiply that times 475 (the number of miles I plan ride) to get your gift amount.

I would offer an option for you to give by the pound (mine--on the hoof), but that may prove to be too expensive for some of you. Instead, as an extra incentive to give, I will provide prizes to those who guess my weight at the end of the ride (after the celebratory beer and wine).

Also, I plan to do a blog or some other way to communicate about the ride (I may be a twit, but right now I don't Twitter), so I will keep you posted on this idea. If you want me to keep you updated, please contact me at my email address: [email protected].

Thanks,

Paul

With just a few clicks of your mouse, please make a gift today to help fund Project 3000.

Simply fill in the secure online gift form , and I will receive notification of your gift. Your contribution will be put right to work to help us with Project 3000. The University of Iowa Foundation (the preferred channel for private support for Project 3000) will send a receipt. ALL gifts will be used to support Project 3000.

Learn more about Project 3000 at www.carverlab.org/project3000/.

Thank you very much for your gift. Together, there is something you can do to provide HOPE.

---

Total Raised: $16,850.00

Happy Birthday, Steve!

So you call yourself a Cubs fan?

Cubs fans can be in movie, aid charity
Donations for credits benefit Project 3000, Little Cubs Field

By Carrie Muskat / MLB.com

CHICAGO -- Want to be in the movies? It's not a starring role, but Cubs fans can show their support for their team and the city of Chicago as well as help others by adding their name to the closing credits of a soon to be released documentary.

Fans can have their name or that of a loved one included in the final credits of the upcoming documentary, "We Believe -- Chicago and its Cubs," to be released in spring 2009.

One half of all proceeds collected will go to two Cubs-related efforts. The money will benefit Project 3000, an organization which Cubs first baseman Derrek Lee helped create to find people affected with Leber congenital amaurosis (LCA), a blinding eye disease. Money also will be donated to the non-profit Little Cubs Field, a replica of Wrigley Field scaled down to a kid-sized park located in Freeport, Ill.

This is believed to be the first time a film production has undertaken active viewer participation to support charities.

Big Ten Network Supports Project 3000

Derrek Lee of the Chicago Cubs and Wyc Grousbeck of the Boston Celtics share an uncommon bond.  Each has a child with a rare genetic eye disease called Leber's congenital amaurosis, otherwise known as LCA.  Rare as this condition is, these two devoted fathers would probably not be aware of their similar experiences were it not for the efforts of Dr. Edwin Stone and his research team at the University of Iowa's John and Marcia Carver Nonprofit Genetic Testing Laboratory.  In their view, it is Dr. Stone who represents hope for the future of their children, and others like them.  It is Dr. Stone's powerful message that "there is something we can do" that has inspired the Lee and Grousbeck families to combine their talents and their resources to support the research that is currently being done.

The initiative spearheaded by Derrek Lee and Wyc Grousbeck is known as Project 3000, named as such to reflect the estimated 3000 people in the United States living with LCA.  One of the major goals of this ambitious effort is to find, and test, these 3000 people in order to advance the research.  Research points to hope in terms of treatment and a possible cure, not only for LCA, but for other inherited eye diseases as well.

An informational video, produced to raise awareness and help spread the word, has been aired on the Big Ten Network.  It has also been made available for viewing here.

To Learn More visit:

Derrek Lee's 1st Touch Foundation
Project 3000: Believe the Unseen

National Forum on Disability Issues

National Forum on Disability Issues
featuring
The 2008 Presidential Candidates (invited)

July 26, 2008
Columbus, Ohio

If you can't make the event in person, you can sign up for the Webcast event.

Read all about it HERE.

Who are the Political Friends of People with Disabilities?

ADA Restoration Headed to House Markup on Wednesday 
ADA Restoration Moves Forward in the House 
Disability, civil rights and employer groups are working hard to secure support for the negotiated legislated language that has been circulated on JFA and now has the support of more than 50 national and 60 state and local disability groups, the US Chamber of Commerce, the Society for Human Resource Management, the National Association of Manufacturers, the Human Resource Policy Association, and a growing list of companies, including McDonalds, General Motors and Honeywell. Lobbying on the House side for this negotiated deal began in earnest yesterday, focused on the members of the House Education and Labor Committee and the House Judiciary Committee (which also plans to mark up the bill next Wednesday).

To avoid confusion with the bill that was introduced last July, we have begun referring to the negotiated legislation as the ADA Amendments Act. In anticipation of next week's markup, we are working to counter any efforts in either committee to attach an ADA notification requirement to the bill, a cause that was championed in prior Congresses by Representative Mark Foley of Florida and that is strongly opposed by the disability-civil rights employer coalition working to enact the ADA Amendments Act. We are also working hard to secure White House and Senate Republican support for the negotiated bill.

:::TAKE ACTION:::
At this point, it looks like the bill will receive strong bipartisan support in the committee markups in
the House. We have included a list of the members of the House Education and Labor Committee and the House Judiciary Committee below. 

·      Contact Members on the House Education & Labor Committee and the House Judiciary Committee between now and Wednesday morning and urge them to support the bipartisan negotiated language that will become the Chairman's mark in both committees. The names are below.

Locate the Members' contact information online, or call the Capitol Switchboard at (202) 224-1904 (V) / (202) 224-3091 (TTY) and ask to be connected to their offices by name. 

·      If you haven't already, consider having your organization "sign on" to the proposed deal language by sending an email to Anne Sommers, JFA Moderator, at [email protected]. Support of the deal language means you not only approve of its language and terms, but that you also agree to defend it against all attempts by Members of Congress to amend it--unless both sides agree to the amendments.

We will continue to share the list of organizational support with Members of Congress as ADA Restoration moves forward in both the House and Senate in coming weeks. 

·      Attend the markup! The House Education and Labor Markup is scheduled for Wednesday, June 18th, at 10:00 in the Rayburn building, Room 2175. Advocates are encouraged to show their support through numbers. The accessible entrance to the building is the main entrance with the horseshoe drive off South Capitol Street.

Balancing Hearts

Last evening Connie and I attended the world premier of a documentary film entitled “A Friend Indeed: the Bill Sackter Story” which was held at the University of Iowa’s Hancher Center for the Performing Arts.

The story of Bill Sackter’s life and times first received national attention in the early 1980’s when a TV film with Mickey Rooney dramatized Bill’s journey from neglect and institutionalization to a featured place in the heart of a community.

The documentary, directed by Lane Wyrick, brings superbly forward the archival film footage of the real life Bill who captured the hearts of a Midwestern college town and then the whole state of Iowa and finally the nation.

Bill Sackter’s story provides a series of intersecting narratives about people with mental disabilities and the proscenium stage of America’s streets.

Abandoned to a Minnesota hospital for “imbeciles” when still a young child, Bill grew up experiencing the inhumane treatment that was so often “part and parcel” of America’s residential institutions for people with disabilities.

Through a series of fortunate and almost happenstance circumstances Bill meets a young college student “Barry” who befriends him and who subsequently becomes Bill’s legal guardian—moving him in the process to Iowa City.

These details are likely familiar to anyone who has seen the original movie starring Mickey Rooney and Dennis Quaid.

Lane Wyric’s documentary aims to bring the real Bill—who was affectionately known as “Wild Bill”—the “man in the coffee shop”, purveyor of java and good cheer, impromptu harmonica player, inveterate local talker—and in so doing the film allows those who knew Bill personally to reflect on the impact he had on hundreds of students and residents of Iowa City.

The film is tender, achingly sad, poignant, witty, and altogether charming. I do think that owing to some inexperience dealing with disability as a historical subject, Lane Wyrick misses the opportunity to contextualize the history of disability incarceration and to in turn reflect on the contemporary problems faced by pwds who are still being hospitalized against their wills. The drawback to this documentary may rest in its deep affection for Iowa City’s collective love of this almost forgotten man—and so by turns, it doesn’t delve into the symbolic nature of disability and the industries of medicalization or charity that still haunt many.

Still it is a beautiful film and it helps us to hold a sweet man in our hearts.

S.K.   

Help Bill's Story Reach & Inspire Everyone! Tell a friend about BillSackter.com and/or join our email list to be updated on the new documentary              “A Friend Indeed - The Bill Sackter Story”

LINKS:

http://www.billsackter.com/Bills_links.htm

Cross-posted on Blog [with]tv