stevekuusisto

Disability Blog Carnival #16: Borders

Pilgrimgirl is hosting this edition of the Disability Blog Carnival.

"As people with disabilities many of us find ourselves navigating
borders. We may encounter physical barriers that prevent us from fully
participating in social activities. Many of us experience awkward
interactions as we move through public spaces–often simultaneously
drawing attention and disfavor. Those of us who inhabit the Borderland
of disability may ‘pass’ for TAB in various spheres (such as on the
‘Net where our bodies aren’t on display), or we may have times where we
assert our disabled identity in order to qualify for benefits or
accommodations. At different times we may feel a kind of fractured
identity as we realize that our life is ‘normal’ for us, so why are we
marginalized or pitied when we attempt to live our everyday lives?"

Pilgrimgirl is new to us as are some of her carnival participants. So many blogs; so little time! These carnivals provide such a wonderful opportunity to *meet* the most interesting people. Don’t you think?

~ Connie

P.S.

Steve and I will be hosting the next Disability Carnival on June 28 and we’ve decided to borrow from the Reader’s Digest
and use "Laughter, the Best Medicine" as the theme this time around.
Of course, we welcome any and all topics but as we’re planning a big move
to Iowa this summer, we’re looking for any opportunity to lighten the
mood up around here! Help us please! Send us your submission(s) via this link or write to us at contact@stephenkuusisto.com Click HERE for more info.

THANKS!

Connie

Happy for the Hornets, Thank You

Dear Lord or Lady of Creation:

We small-ish creatures down here are grateful for all your gifts and I should be remiss indeed if I forgot to mention the hornets. They are lovely. Their wings are delicate as hand blown glass, and they sparkle like motile slivers from a rainbow as they flit with dark purpose around the woodpile. How delicate they are! Their waists are thin as the illuminated periods in hand painted bibles. Oh, and their abdomens swell with mystery and all that hot music of private algebra. And I haven’t even begun to marvel at their angled eyes that can discern soft innocence from a distance of a thousand yards.

Yes, they are perfect engines of suspicion without consciousness, these furious and intractable little bastards. How adoringly we embrace them with our soft and child like appendages, our little bums and piggly toes, each one of us insolvent in the richness of faith. Dear Creator, thank you.

Oh and we are also grateful for anaphylactic shock, and swollen tongues.

Thank you.

We are beseechingly yours in this world of raw and unexpected alarms. Forgive us our ungovernable innocence. How foolish we were to conceive of playgrounds and swingsets. How errant our ways in your garden where the lesson is clear: stay inside. Don’t move. Bow and pray behind curtained windows. Repeat as needed.

Faithfully yours,

Homo Erectus

Reality: Books for the Blind Still in Peril

You can imagine my surprise when I received a cell phone call yesterday from a staffer at U.S. Rep. Debbie Wasserman Schultz’s office in Washington. Rep. Wasserman Schultz’s office was calling to "correct the record" about the funding emergency facing the Talking Books program for the Blind. Apparently the folks in her office were aware of my two posts about the funding emergency that now threatens the future of books for people with reading related disabilities.

I was hoping of course to hear that the dire news about the appropriations committees decision regarding the Talking Books program had been completely misreported and that the funding needed by the Library of Congress to continue the National Library Service was already in place.

But in fact the funding that was authorized by the committee chaired by Rep. Wasserman Schultz has only given the National Library Service for the Blind approximately one third of the funding they will need to continue the program. This is a fact. You can look it up.

Apparently there was an inaccuracy in my post according to the Representative’s office, namely that the committee did not authorize the director of the Library of Congress to spend money for the Talking Books program on other programs. Aha! Here’s what they did.

The money targeted for the blind services (which is still only a third of what’s needed to continue the program, remember?) can ONLY be spent on something else if the director of the Library of Congress goes back to the committee and receives permission.

Now that’s really reassuring. I feel so much better today.

I urge my readers and friends to campaign vigorously for the full funding of the Talking Books program and please don’t let up. Taking books away from the blind and elderly is unacceptable. Period.

S.K.

Why Paris Hilton's Story Matters

Like everyone else, I woke this morning to the news that Paris Hilton, the American Hotel heiress and "celebpar excellence" has been returned to jail by the judge. I don’t care whether she deserves 45 days in the slammer for DUI or other assorted traffic violations: what matters is that she is now as of this morning a prisoner in America’s largest psychiatric facility, which is the Los Angeles County Jail. The mental health system in the United States is a disgrace. If you even dimly suspect that Paris Hilton may not belong "there" imagine all the youthful offenders who became adult offenders who hail from families that never had medical insurance or proper treatment for serious mental illnesses. Imagine the third rate care such prisoners receive in the L.A. jails. This is the kind of thing that keeps me awake at night. Our nation’s health care crisis is in my view the most serious threat to our nation’s future. Period. S.K.

Crazy Love as in "I Am Now Damaged Merchandise"

After a jealous former boyfriend threw acid in her face, Linda considered herself "damaged merchandise" unworthy of love. Heck she went blind thanks to this lunatic former love. Who would *want* her now?

So what’s a girl to do? Marry the B@*&%#**^ ?! Which is exactly what Linda did – after he served time in prison that is.

Just out in selected movie theaters is "Crazy Love", a documentary covering the relationship between Linda and Burt Pugach. Here is what Christy Lemire of the Associated Press had to say about this PG-13 rated film:

"Crazy Love" is a documentary about a man who was so obsessively possessive of his ex-girlfriend that he lied to her about divorcing his wife, paid guys to beat her up so she’d feel frightened enough to run back to him, and, most shockingly of all, hired a thug to throw lye in her face, leaving her blind and disfigured at 22.

And it’s funny!"

Did Ms. Lemire say funny? Even after reading her review I fail to see what is so funny about this story. Should curiosity get the better of me and I decide to see the movie, will I think it funny then? Somehow I doubt it.

I’ve done a little reading of reviews of this documentary online and I thought about posting them here, but quite frankly, I’ve got better things to do. I’d like to think that proceeds from this documentary, should there be any, will be used for greater good to promote issues such as the rights of battered women or domestic violence against women with disabilities or some such thing. But somehow I doubt that too.

~ Connie

Talking Books Emergency

I received the following e-mail this morning by way of Irwin Hott, who is President of the Ohio Chapter of the American Council of the Blind. The note he is passing along is from the ACB’s "sister" organization, the National Federation of the Blind. Note that there are specific phone numbers you can call to express your opposition to the current funding proposal that would, effectively, jeopardize the continued existence of books for the blind.

S.K.

Here is more on funding of the Talking Book program:

From: Hartle, Jesse
Sent: Thursday, June 07, 2007 4:55 PM

Urgent action is needed to respond to the House’s Legislative Branch Subcommittee’s proposed appropriations bill relating to the fiscal year 2008 budget request of the Library of Congress. As you all know the National Library Service for the Blind and Physically Handicapped (NLS) has been working on a plan to convert the Talking Books program to a digital format. The cost of this needed transition from analog cassette to digital technology is $76.4 million over a four-year period ($19.1 million for each of the next four years). The House Legislative Branch Subcommittee has only included $7.5 million for this project in the bill, which passed the subcommittee yesterday. The subcommittee also voted against an amendment raised by Congressman Ray LaHood of Illinois that sought to include full funding for the NLS upgrade. Not only is this amount just a third of what was requested by the Library of Congress, but the subcommittee further gave the Librarian of Congress the power to transfer all or part of the funds from the Books for the Blind program to other upgrades for the Library. Essentially, if the Librarian of Congress chooses to transfer funds from the $7.5 million allotted for the digital conversion program, the Talking Books program will be killed due to a lack of equipment to repair broken tape players and the simple fact that all aspects of cassette technology will become obsolete in the next four years. The Legislative Branch Appropriations bill will now be presented to the full Committee on Appropriations on Tuesday, July 12. It is imperative that we flood the offices of Committee members and the office of Subcommittee Chair Debbie Wasserman Schultz before July 12th to urge them to include the full funding for the digital upgrade and to protect these funds from being shifted within the Library of Congress to meet other needs. The Talking Books program is the largest and most essential available source of information for blind people as a whole, and we need to protect this information source with our greatest effort. Included below is a list of the members on the Appropriations Committee and their office numbers. Please contact their offices, and let them know how important the Talking Books program is to the blind. I will update you with further information on this initiative, but your calls should start immediately.

Thanks in advance for all of your hard work.
Jesse Hartle
Government Program Specialist
NATIONAL FEDERATION OF THE BLIND
1800 Johnson Street, Baltimore, MD 21230
(410) 659-9314, ext. 2233
jhartle@nfb.org
House Committee on Appropriations
Full Committee – June 7, 2007
FL D, Schultz, Rep Debbie Wasserman, 202-225-7931
(alphabetical by state)
AL D, Cramer, Rep Robert E. Bud, Jr., 202-225-4801
AL R, Aderholt, Rep Robert B., 202-225-4876
AR D, Berry, Rep Marion, 202-225-4076
AZ D, Pastor, Rep Ed, 202-225-4065
CA D, Farr, Rep Sam, 202-225-2861
CA D, Honda, Rep Mike, 202-225-2631
CA D, Lee, Rep Barbara, 202-225-2661
CA D, Roybal-Allard, Rep Lucille, 202-225-1766
CA D, Schiff, Rep Adam, 202-225-4176
CA R, Calvert, Rep Ken, 202-225-1986
CA R, Lewis, Rep Jerry, 202-225-5861
CT D, DeLauro, Rep Rosa L., 202-225-3661
FL D, Boyd, Rep F. Allen, 202-225-5235
FL R, Crenshaw, Rep Ander, 202-225-2501
FL R, Weldon, Rep Dave, 202-225-3671
FL R, Young, Rep C. W. Bill, 202-225-5961
GA D, Bishop, Rep Sanford D., Jr., 202-225-3631
GA R, Kingston, Rep Jack, 202-225-5831
IA R, Latham, Rep Tom, 202-225-5476
ID R, Simpson, Rep Mike, 202-225-5531
IL D, Jackson, Rep Jesse L., Jr., 202-225-0773
IL R, Kirk, Rep Mark Steven, 202-225-4835
IL R, LaHood, Rep Ray, 202-225-6201
IN D, Visclosky, Rep Peter J., 202-225-2461
KS R, Tiahrt, Rep Todd, 202-225-6216
KY D, Chandler, Rep Ben, 202-225-4706
KY R, Rogers, Rep Hal, 202-225-4601
LA R, Alexander, Rep Rodney, 202-225-8490
MA D, Olver, Rep John W., 202-225-5335
MD D, Ruppersberger, Rep C. A. Dutch, 202-225-3061
MI D, Kilpatrick, Rep Carolyn Cheeks, 202-225-2261
MI R, Knollenberg, Rep Joe, 202-225-5802
MN D, McCollum, Rep Betty, 202-225-6631
MO R, Emerson, Rep Jo Ann, 202-225-4404
MS R, Wicker, Rep Roger F., 202-225-4306
MT R, Rehberg, Rep Dennis, 202-225-3211
NC D, Price, Rep David E., 202-225-1784
NJ D, Rothman, Rep Steve, 202-225-5061
NJ R, Frelinghuysen, Rep Rodney P., 202-225-5034
NM D, Udall, Rep Tom, 202-225-6190
NY D, Hinchey, Rep Maurice D., 202-225-6335
NY D, Israel, Rep Steve, 202-225-3335
NY D, Lowey, Rep Nita M., 202-225-6506
NY D, Serrano, Rep Jose E., 202-225-4361
NY R, Walsh, Rep James T., 202-225-3701
OH D, Kaptur, Rep Marcy, 202-225-4146
OH D, Ryan, Rep Tim, 202-225-5261
OH R, Hobson, Rep David L., 202-225-4324
OH R, Regula, Rep Ralph, 202-225-3876
PA D, Fattah, Rep Chaka, 202-225-4001
PA D, Murtha, Rep John P., 202-225-2065
PA R, Peter son, Rep John E., 202-225-5121
RI D, Kennedy, Rep Patrick J., 202-225-4911
TN R, Wamp, Rep Zach, 202-225-3271
TX D, Edwards, Rep Chet, 202-225-6105
TX D, Rodriguez, Rep Ciro D., 202-225-4511
TX R, Carter, Rep John R., 202-225-3864
TX R, Culberson, Rep John, 202-225-2571
TX R, Granger, Rep Kay, 202-225-5071
VA D, Moran, Rep Jim, 202-225-4376
VA R, Goode, Rep Virgil H., Jr., 202-225-4711
VA R, Wolf, Rep Frank R., 202-225-5136
WA D, Dicks, Rep Norm, 202-225-5916
WI D, Obey, Rep David R., Chair, 202-225-3365
WV D, Mollohan, Rep Alan B., 202-225-4172

Go to the 19th Floor

If you click on the link on this blog to The 19th Floor you will see a succinct personal narrative by Mark Siegel about the ingrained and committed life force that keeps him and tens of thousands of other people with disabilities thinking about ways to avoid being institutionalized. Mark is an attorney in Minneapolis but he’s always just a quick turn of events away from having his independence taken away.

Disability is a tough subject for those of us who would write personal narratives because frankly the conditions of disablement place us in provisional states of being and that uncertainty is a daily thing, not some abstract French philosophical condition. As a blind person I must cross the street with the knowledge that I could be a-goner. And because I believe that consciousness is sacred I tend to recite poems in my head while I’m crossing in traffic.

Perhaps I will leave this world unexpectedly while fetching a cup of coffee. Perhaps I will sail out into the stars with Walt Whitman in my final orbit.

Disability is about living freely and it has some sobering and often unspoken realities as well.

Here’s a good poem for crossing the street:

"Mankind owns four things

That are of no use at sea:

anchor, rudder, oars,

and the fear of going down."

– Antonio Machado

S.K.

Let's Take Those Books Away from the Blind

The House of Representatives is currently considering an appropriations bill that would, among other things, cut by half the requested funds for the Library of Congress "Talking Books"program for blind and disabled readers. At stake are the funds necessary to move the old fashioned casette tapes of the library to digital playback. This transition is necessary because the old fashioned tape machines that play talking book tapes and which the blind have been using since the late sixties are no longer being manufactured. The Talking Books program which is also known as the National Library Service for the Blind must have the full funding in order to continue providing books to people with disabilities.

The very notion that the U.S. government is willing to cut the heart out of the books for the blind program is so disgraceful that even I am shocked by the brazen indifference of our legislators. What kind of a nation do we purport to be? We talk endlessly about the respect for life, respect for education, equality, opportunity for all, and at the same moment our federal government will actively consider underfunding a program that has for over fifty years provided blind people and the elderly with the opportunity to read. What will come next? Let’s stop funding the protection of environmentally fragile wetlands. Oh. We already did that? Hmmm. Let’s stop funding for nutritional programs for women in poverty with children. Oh. We did that already? Well let’s get rid of the books for the blind and the disabled. Let’s get them back on the streets with tin cups while we’re at it. And let them buy their own tin cups. Maybe Haliburton can manufacture new government approved begging bowls? Hey, we could try those out in Iraq first? Good plan! I need a muscular cigar! Where’s my spitoon? I thought Haliburton was still making those spitoons?

Please contact your local U.S. Representative. Or don’t. One could be tempted to just give up. Forget the fundamental tradition of providing educational opportunity for all. Let’s change our country’s name to: "The Country Formerly Known as the United States" and get on with the ravaging of the defenseless and vulnerable.

S.K.

He Was Big

I was reading student essays as required by my professorial duties when I came across the following sentence:

"The Elephant Man was big in his day, but not because of his head."

I love the authoritative "brio" of the assertion because this is the stuff of poetry.

"April is the cruelest month…" Poetry asserts. It feels right. Even when it isn’t true.

This is of course why politicians love poetry.

I wish we had a little more poetry in the presidential debates.

I would really like it if Wolf Blitzer asked each candidate to recite aloud his or her favorite poem. This would be revealing I think. And much more useful than hearing about their respective faith in God.

I, by the way, always spell God with a big G because "she deserves it.

Here are some speculative poetry samples for some of the current candidates:

Hillary: "How strange to give up all ambition." (Robert Bly)

Mitt Romney: "This is just to say I have eaten the plums that were in the icebox…" (W.C. Williams)

John Edwards: "I sing and celebrate myself…" (Walt Whitman)

Rudy: "Call the roller of big cigars, the muscular one, and bid him whip in kitchen cups concupiscent curds…" (Wallace Stevens)

Barack Obama: "A narrow fellow in the grass…" (Emily Dickinson)

John McCain: "How do you like your blue eyed boy now Mr. Death?" e.e. cummings)

Dennis Kucinich: "Do I dare to eat a peach?" (T.S. Eliot)

You can of course make up your own list of potential poems for potential potentates…

S.K.

Channel Surfing in America

What is it about American television that so distresses me? Forget the advertising and the trivial programs. I believe in "brain candy" just as much as the next guy–heck, I even bought a copy of People magazine last week. Jeez. I’ve even been known to eat "Slim Jims" when I think no one’s looking.

This morning I was switching between NBC’s "Today" show and the MSNBC morning talk program formerly known as "Imus" and I heard sequentially from Mike Huckabee, the former governor of Arkansas who is a Republican candidate for President of the United States, and blip! back on NBC there was Dr. Jack Kevorkian, otherwise known as "Dr. Death".

Gov. Huckabee was talking about the need for America to have good health care. Blip. Dr. Death was talking about the need for America to have good euthenasia. Blip. Gov. Huckabee was talking about getting the government off our backs. Blip. Dr. Death was talking about euthenasia as a human right.

I was shaving. I use the Braun self cleaning electric razor which gives me a superior shave and which smells citrus fresh every morning. I was channel surfing and having a good shave and a cuppa coffee on an ordinary rainy summer morning in Ohio. I was comfortable. I felt good.

I wanted to join the TV Land conversation. Wanted to bring Ann Curry of the Today Show and Amy Robach of MSNBC and Dr. Death and Gov. Huckabee together for a good grape whalloping session. I wanted the TV to reflect a disability perspective. I wasn’t going to get it this morning of course. But I did have a good shave thanks to German technology. And here’s the problem as I saw it while shaving:

Many people with disabilities are distressed by the grassroots efforts to legalize euthenasia for the simple reason that it is conceivable that the disabled will be put to death by a corrupt medical care system. This is a serious concern and that’s why I wanted Dr. Death and Gov. Huckabee in the same room. We can’t guarantee quality of life for our citizens with the present health care crisis in the United States. Until we can provide everyone in a democracy with good health care it seems to me that introducing euthenasia into the current health care system is like rearranging those famous deck chairs on the Titanic. If we can’t deliver health care to over forty million people than we shouldn’t be delivering euthenasia either. I believe what I’m saying. But the thing with TV is that the medium won’t allow for this sort of articulated conversation. And this is why the blogosphere is so compelling these days.

I suspect that Gov. Huckabee is a nice man. I suspect that Jack Kevorkian is a creep. And I further suspect that they are both correct in their respective positions. But the quality of human life is the most important issue and TV doesn’t lend itself to that subject. I wish that it did. Personally, I’d happily pay 7 dollars a gallon for gas like they do in Europe if it meant that everybody had health care and could be protected from H HMO fraud and heartlessness.

This is a "disability" perspective and I suspect that it’s also a mainstream view.

Maybe we need a "quality of life" channel?

S.K.