Tuesday, December 23, 2008

The Whiff of Hope

A Whiff of Hope. Pictures a side view woman's face with eyes closed."The popular belief is that protests arise when large numbers of individuals are fed up with the injustices of their lives. Actually, that rarely occurs. Rather, people rise up when they sense a whiff of hope," writes Frank Bowe in a Ragged Edge article. [emphasis added]

Wow, I could not have said it better. What a great phrase!

The sad thing is that there are people with disabilities, workers in the disability field, bureaucrats, who are saying just the opposite. They say the reason we don't have more of an active movement is because times have changed. It's not the same as it was 20-30 years ago. We really had needs to address then. The rank and file is content with what we have. These leaders act like all that is left for us to do is a little tweaking. I could not disagree more.

Those statements come from those who do not understand why oppressed people organize or sacrifice their time and resources to any particular issues. Those statements are not from people who hope, from advocates, or organizers; they are from desk-jockeys, office-holders, or pencil-pushers.

What does the
whiff of hope smell like?

It smells like people can have some control over their lives. It smells like people can get their brothers and sisters with disabilities out of abusive institutions. It smells like we can get people to register to vote, or have control over our lives, or need our sidewalks fixed. It smells like the hope of a better life. So for those of you out there who peddle hopelessness in the form of, "we have what we need", or "there's no reason for people to organize around issues anymore," or, "people with disabilities are satisfied or lazy", here is a short list of things we can hope to end on our watch. We are the standard bearers for our generation; if not us, who? We can do it. Let's go get 'em!

A To-Do List

  • Job discrimination is common in years following ADA passage: the ADA was no silver bullet against job discrimination, say disability researchers Jae Kennedy and Marjorie Olney.
  • Federal law (the Fair Standards Act of 1038, among others) permits people with disabilities to be excluded from worker protection laws such as minimum wage and safety regulations.
  • Companies firing disabled workers in record numbers. A survey by Mercer Human Resource Consulting found that 27 percent of companies dismiss workers as soon as they go on long-term disability.
  • A pernicious 42 percent employment gap separates working-age people with and without disabilities.
  • Far too few people with disabilities are registered to vote. A survey of 196 private non-profit disability agencies has found that over half (54%) are "not attempting to meet the requirements of the National Voter Registration Act," which calls for agencies to register individuals to vote. The study was funded by the National Institute on Disability and Rehabilitation Research, as part of a three-year grant called "The Empowerment Project".
  • Medicare's Homebound Rule - The Medicare home health homebound rule is being used to imprison thousands of people with permanent disabilities and serious health conditions in their home each day.
  • Is anyone watching to ensure accessibility codes are enforced? I have a friend who worked for the zoning commission in my town. He said, if no one is watching, lots of accessibility errors and omissions get passed through.
    • Work with general contractors/construction unions to educate them on codes
    • Work with city zoning offices to ensure zoning laws are enforced
    • Work for visitability laws in communities
  • Guide and/or service dog access is still abysmal. Created educational packet to distribute to every business, hospital, medical clinic, office and transportation systems.
  • Language - Words used to describe people with disabilities are used that demean, devalue and discriminate. The use of the word "retarded" could be an entire campaign on its own.
  • If we had national single-payer healthcare, there would be no "pre-existing conditions", that for-profit health care agencies could use to deny services because people are not worthy of digging into their profits. Doctors and patients could make decisions about treatment plans.
  • Well-meaning parents of growing or adult children do not often make decisions based on the best interest of their child. They can be overprotective and make decisions based on what is best or most comfortable for themselves.
  • Personal assistants need healthcare. Thousands of workers who provide vital services to people with disabilities leave for other jobs that offer health care benefits. Many people who provide personal assistant services are themselves people with disabilities.
  • City and State park systems lack accessible rooms, trails and interpretive centers. Social isolation is devastating to any human being.
  • A young boy with a disability sliding down a circular slide. from:http://www.noahsworldusa.com/Children with disabilities still, after more than thirty years of IDEA do not receive "free appropriate public education". Parents are intimidated by schools and children lack for the most basic of special education and related services.
  • Mental health parity in health care plans does not exist and should.
  • The "Money Follows the Person Act: not law yet.
  • State and county courthouses remain inaccessible to people with disabilities. The U.S. Supreme Court ruled on May 17, 2004 that states are not immune from requirements to make their courthouses accessible under the 1990 Americans with Disabilities Act More.
  • Independent living for a million adults doesn't exist because of just a few hours of help. More than 3 million people in the U.S. need about 16 hours of support a week to live independently. Without it they face going hungry, falling or are forced to endure problems that increase the risk of institutionalization and death, according to a new study by researchers at the Disability Statistics Center at the University of California at San Francisco.
  • Nursing home data can help with providing community alternatives, says disability rights attorney Steve Gold. There are at least 267,691 disabled people living in nursing homes who want to move out.
  • Social Security Determination offices have problems nationally. The state-operated offices determine whether applicants are eligible for disability benefits. The General Accounting Office report issues last month said the offices have significant problems.
  • Abuse of seniors under-reported, says study from the University of Iowa; because state laws vary, reporting of instances of "elder abuse" vary widely.
  • What are the ethical, legal and social implications of the Human Genome Research Institute? The University of Kansas recently received $915,000 to study the issue. Surely we have a few things to say about that!
  • What are we doing here? Asian nations to develop universal design standards Japan, China and South Korea are planning to develop a set of universal design standards for all three nations, with the aim of eventually having the standards adopted worldwide. What is our country doing?
  • Government websites still have access problems, says report. Less than a fourth meet federal requirements for access under Section 508 of the Rehabilitation Act.
  • Web access still remains a national disgrace. Ten national disability rights groups have filed a friend-of-the-court brief to ensure that the World Wide Web is accessible to persons with disabilities. The Americans with Disabilities Act covers Web, says NCD. Yes, says the National Council on Disability in a paper released last week. Implementation is marginal. And that's just the virtual world. The natural world continues be inaccessible.
  • "Students with disabilities, who now are estimated to represent nearly 10 percent of all college students, currently experience outcomes far inferior to those of their non-disabled peers," says the National Council on Disability.
  • Disaster mitigation and people with disabilities - When floods, tornados or other natural disasters occur, take a guess at who is last in line?
  • Olmstead implementation - more needs to be done to get people out of nursing homes and into their own homes. More money, more staff for CILs, more time to free individuals, more indignation about people being imprisoned for the crime of having a disability.
  • More often than not, disability issues are seen as charity issues, not civil or human rights issues.
  • Medicaid waivers need oversight. The federal Centers for Medicare & Medicaid Services does not adequately monitor Medicaid state waiver programs which provide in-home services to 700,000 people nationwide, the GAO said in a report issued recently. A leading disability activist calls the report "paternalism.
  • Class and disability issues are fused together, yet rarely seen as related.
  • 'Inclusive Home Design' bill enters Congress. Rep. Jan Schakowsky (D.-Ill.) has introduced H.R. 2353 to require all single family homes receiving federal funds be built with a no-step entrance, "32" clearance doorways on the main level, and one wheelchair accessible bathroom.
  • A new report reveals the obvious. Older Americans want independence, control, says report Older people -- the nation's fastest-growing demographic segment -- want to remain independent and in their own homes, and services are woefully out of step with this priority.
  • Most people with disabilities do not have "disability pride" and do not see themselves as worth of equal treatment. Likewise, only a small few understand and can revel in the glory of disability culture.
  • Read the fine print in the Hippocratic oath and you will find that "do no harm" does not apply to people with disabilities.
    • Physician assisted suicide is a national disgrace.
    • People with disabilities who are depressed are more likely to be assisted to death than referred to counseling.
    • In 1989, the U.S. Civil Rights Commission issued a 153-page report entitled "Medical Discrimination against Children with Disabilities." Among the events considered by the Commission was an experiment conducted from 1977 to 1982 at the Children's Hospital of Oklahoma. Doctors there developed a "quality of life" formula for babies with spina bifida, taking into account the socioeconomic status of the baby's family to determine what to advise families about a simple but life-and-death procedure. Better-off families were provided a realistic and optimistic picture of their child's potential. Poor families were provided a pessimistic picture. All of the families who were given an optimistic picture asked for medical care for their children. Conversely, four out of five poor families agreed not to treat their children, and twenty-four babies died.
    • Passive denial of appropriate care is more likely to happen to someone with a disability than someone without one.
  • Disabled people are the least likely to use Internet, says study Almost three quarters of Americans who report having a disability also do not use the Internet, says a new study from The Pew Internet & American Life Project.
  • Reading newsprint hard for many - Of the one in 5 working-age adults who reports having a disability, 16 percent have trouble seeing the words in newsprint, says the Centers for Disease Control.
  • A new study reveals that people with disabilities lose nearly all their employment cases. Over 9 out of 10 times, employers prevail in disability discrimination lawsuits against them, says the current issue of the American Bar Association's Mental & Physical Disability Law Reporter.
  • Employers know little about tax credits, says human resource society Human resource professionals in the nation's top companies know little about the tax incentives available to businesses for hiring persons with disabilities. They also fear lawsuits over lack of compliance.
  • Tax credits have had limited effect on employment of people with disabilities. Existing tax incentives designed to encourage businesses to employ and accommodate workers with disabilities have had limited effect, says a GAO study.
  • Survey: employers reluctant to hire workers with disabilities - Only one in four companies in the U.S. employs workers who are known to have disabilities, says a new report.
  • People with developmental disabilities have a 4 to 10 times higher risk of becoming crime victims than people without a disability.
  • Sixty-eight percent to 83 percent of women with developmental disabilities are sexually assaulted in their lifetime; that is 50 percent higher than the rest of the population. More than half never seek legal or treatment.
  • Eighty-one percent of people with mental illness are physically or sexually assaulted.
  • More than 85 percent of women with disabilities are victims of domestic abuse, in comparison with, on average, 25 to 50 percent of the general population.
  • Women with Disabilities at Greater Risk for Partner Abuse
  • Based on emergency shelter data for Illinois, more than half of the individuals using shelters are identified as having a physical or psychiatric disability (about 24,000 people in 2003).
  • Proportionally more persons with disabilities rent (32%) and are rent-burdened (60%) when compared to non-disabled (25% and 46% respectively).
  • There is an SSI Marriage Penalty - If you marry someone who is also on SSI you lose money. In addition to the monetary penalty recipients who marry, those must also endure: Not being able to openly celebrate their love and commitment to one another in the company of friends and family.
    • Not being able to inherit one another's estates as a spouse.
    • Not being able to get information when their partner is in the hospital
    • Not being able to make end of life decisions for their partner when necessary
    • Not being able to make funeral arrangements for their partner
    • Not being able to live openly as husband and wife
  • Depictions of people with disabilities on television and in the movies (Tropic Thunder, for example) portray us a stupid, oafish and incapable of holding positions of power. The most recent example with Saturday Night Live's depiction of Governor David Patterson of New York; his response best sums it up: There is only one way that people [with disabilities] could have an unemployment rate that’s six times the national average — it’s attitude. And I’m afraid that the kind of third-grade depiction of individuals and the way they look and the way they move add to that negative environment.”
It's a partial list. I didn't even touch the issues of sexual identity and disability, or race and disability, or artists with disabilities, or promoting disability culture or many other disability related issues. If I had more time, I'm sure I could triple (quadruple?) the length of the list and still not be finished listing the issues that face us and our fight for equality in our government and society.

Fight Complacency with Hope

Complacency is not a factor in most people with disabilities lives; it is our leaders who are complacent, who do not offer us a whiff of hope. Do you get it? Do you? For you who do believe in a whiff of hope, Obama's presidential campaign taught us is that hope is contagious and a great organizing tool. So, for 2009, let's start spreading that whiff of hope (God, how I love that phrase) and bringing people together to change our futures.

Cross-posted at EndeavorFreedom.TV

I have been absent from the blogosphere lately. I've been working with a local grassroots action team to spread hope and fight for our rights. It's been great fun and we've seen a lot of success. However, I have missed blogging. My new year's revolution is to write whiffs of hope for all the 31 days of January to get me back in the habit. Wish me luck.

Happy Holidays Everyone...

Thursday, December 4, 2008

Got Milk?

Harvey Milk is the subject of a new movie out this holiday season. It is a "must see" for everyone interested in grassroots community organizing or those who want to learn how to work for equal rights.

Milk was the first openly gay man elected to public office on the Board of Supervisors in San Francisco in 1977. Milk said:

"...you've got to keep electing gay people...to know there is better hope for tomorrow. Not only for gays, but for blacks, Asians, the disabled, our senior citizens and us. Without hope, we give up. I know you cannot live on hope alone, but without it life is not worth living. You and you and you have got to see that the promise does not fade." [Emphasis added]

Photo of Harvey Milk.He was assassinated by a fellow Supervisor along with the Mayor of San Francisco in 1978. He only served a little over a year; nonetheless, Harvey Milk left a legacy. He greatly influenced lesbian and gay and political views; and was also a supporter of human rights for all disenfranchised people.

The movie does a great job at showing how a few people can start a giant movement. There are lessons we in the disability rights movement can glean from his story and activism.

Come Out

Milk urged gays and lesbians to come out. That was a brave thing to do in the 70s when no anti-hate laws existed and gay bashing was a red-neck sport. He believed that if gays came out, then people would understand that we all have the same wants and needs.

Coming out means more than having people see your disability. It means becoming more visible; speaking up and speaking out. Show yourselves to be part of the disability community and that you want what we all are entitled to.

If you find yourself unable to get into an inaccessible building... climb on your metaphorical soap box and let people know, "This building is inaccessible!" Make the phone call, write the letter.

Enlist your family into the fight for equal rights. Ask your neighbors to join you. Join or form an organization dedicated to fighting back.

It's Never to Late To Start

Harvey didn't really develop his activism until he was in his 40s. Before that he wandered from job to job and hid his sexual orientation. It was only after he moved to San Francisco and met others who shared his closeted existence that he began to put the pieces together and understand that the personal is political.

Keep Trying

Before winning his seat on the board of supervisors, he lost two elections. Losing is difficult. But it should not make us callous, or defeated. It's a learning experience. Circumstances change, people's ideas change, and our skills change with each experience.

Failure is maligned far too often. When we take risks it is inevitable that we will sometimes fail. But with that risk taking, comes knowledge, new skills and expertise.

Ignore Detractors

If people listened to the nay-sayers, we'd be traveling by horse and buggy, women would not vote, you would have never learned to read, and we wouldn't be on the verge of inaugurating our first Black President.

One by One

Harvey Milk started by talking to people who came into his camera shop, one by one. Then he started passing out flyers outside the shop. People he talked to brought other people to the shop to talk to him... and so it started.

Dustin Lance Black who wrote the screenplay for Milk said, "When you find a people who are voting against you, it might be because they don't know you yet -- or they don't know they know you. That is the message of Harvey Milk."

It is good advice the disability community needs to heed. Go see this great little movie.


This video shows the candlelight vigil in the Castro District of San Francisco the evening Harvey Milk was murdered. He taped the message prior to his death.

This is the trailer for the movie "Milk"

Siskel and Ebert review A documentary about Harvey Milk

Thursday, October 16, 2008

65 US Nobel Scientists "Open Letter to Americans"

I received this by email from my Aunt and Uncle. I hope you find it as important as I did.

65 U.S. Nobel Laureates in Science send an open letter to the American people strongly urging support for Senator Obama.

The letter marks the largest number of US Nobel Laureates - "the nation's greatest minds" - ever to endorse a political candidate.

Note: these are all Scientists who are concerned about America's Economic decline.

October 14, 2008

An Open Letter to the American People,

This year's presidential election is among the most significant in our nation's history. The country urgently needs a visionary leader who can ensure the future of our traditional strengths in science and technology and who can harness those strengths to address many of our greatest problems: energy, disease, climate change, security, and economic competitiveness.

We are convinced that Senator Barack Obama is such a leader, and we urge you to join us in supporting him.

During the administration of George W. Bush, vital parts of our country's scientific enterprise have been damaged by stagnant or declining federal support. The government's scientific advisory process has been distorted by political considerations. As a result, our once dominant position in the scientific world has been shaken and our prosperity has been placed at risk. We have lost time critical for the development of new ways to provide energy, treat disease, reverse climate change, strengthen our security, and improve our economy.

We have watched Senator Obama's approach to these issues with admiration. We especially applaud his emphasis during the campaign on the power of science and technology to enhance our nation's competitiveness. In particular, we support the measures he plans to take - through new initiatives in education and training, expanded research funding, an unbiased process for obtaining scientific advice, and an appropriate balance of basic and applied research - to meet the nation's and the world's most urgent needs.

Senator Obama understands that Presidential leadership and federal investments in science and technology are crucial elements in successful governance of the world's leading country. We hope you will join us as we work together to ensure his election in November.

Alexei Arikosov Physics 2003
Roger Guillemin Medicine 1977
Peter Agre Chemistry 2003
John L. Hall Physics 2005
Sidney Altman Chemistry 1989
Leland H. Hartwell Medicine 2001
Philip W. Anderson Physics 1977
Dudley Herschbach Chemistry 1986
Richard Axel Medicine 2004
Roald Hoffmann Chemistry 1981
David Baltimore Medicine 1975
H. Robert Horvitz Medicine 2002
Baruj Benacerraf Medicine 1980
Louis Ignarro Medicine 1998
Paul Berg Chemistry 1980
Eric R. Kandel Medicine 2000
J. Michael Bishop Medicine 1989
Walter Kohn Chemistry 1998
N. Bloembergen Physics 1981
Roger Kornberg Chemistry 2006
Michael S. Brown Medicine 1985
Leon M. Lederman Physics 1988
Linda B. Buck Medicine 2004
Craig C. Mello Medicine 2006
Mario R. Capecchi Medicine 2007
Yoichiro Nambu Physics 2008
Martin Chalfie Chemistry 2008
Marshall Nirenberg Medicine 1968
Stanley Cohen Medicine 1986
Douglas D. Osheroff Physics 1996
Leon Cooper Physics 1972
Stanley B. Prusiner Medicine 1997
James W. Cronin Physics 1980
Norman F. Ramsey Physics 1989
Robert F. Curl Chemistry 1996
Robert Richardson Physics 1996
Johann Diesenhofer Chemistry 1988
Burton Richter Physics 1976
John B. Fenn Chemistry 2002
Sherwood Rowland Chemistry 1995
Edmond H. Fischer Medicine 1992
Oliver Smithies Medicine 2007
Val Fitch Physics 1980
Richard R Schrock Chemistry 2005
Jerome I. Friedman Physics 1990

Joseph H. Taylor Jr. Physics 1993
Murray Gell-Man Physics 1969
E. Donnall Thomas Medicine 1990
Riccardo Giacconi Physics 2002
Charles H. Townes Physics 1964
Walter Gilbert Chemistry 1980
Roger Tsien Chemistry 2008
Alfred G. Gilman Medicine 1994
Daniel C.Tsui Physics 1998
Donald A. Glaser Physics 1960
Harold Varmus Medicine 1989
Sheldon L. Glashow Physics 1979
James D. Watson Medicine 1962
Joseph Goldstein Medicine 1985
Eric Wieschaus Medicine 1995
Paul Greengard Medicine 2000
Frank Wilczek Physics 2004
David Gross Physics 2004
Robert W. Wilson Physics 1978
Robert H. Grubbs Chemistry 2005

The views expressed in this letter represent those of the signers acting as individual citizens.

They do not necessarily represent the views of the institutions with which they are affiliated. The Medicine award is for "Physiology or Medicine."

Saturday, September 13, 2008

How I Spent My Summer Vacation - Part One

Updated September 15,2008

First let me explain that this piece will come in two parts. Part One, below, is about a family trip back into our own history and culture. Part two, will follow, hopefully in the next week. It is a telling of grassroots advocacy efforts that our little Springfield Advocacy Action Team attacked this summer.

Both, in their own way, were delightful, exciting, poignant, and I will remember them always…

I come from a very ethnic family. We are proud of our immigrant history. I am half Slovenian and half Polish. Both are eastern European peasant cultures. For some reason, I identify myself more with the Slovene side. I am happy that my sister identifies more with her polish half, to make my mother feel less slighted. However, after so many years of marriage, my mother has to be, at the very least, an honorary Slovene.

Time spent with my Sluga grandpa, aunts, and uncles always included lots of accordion and concertina music, beer, homemade wine, 8-part harmonies, and Slovenian folk songs and polkas…

For those of you, who did not know that there is such a thing as a Slovenian style polka, let me quickly educate you. Slovenes taught the Poles how to Polka! (Sorry Mama.) Slovenian style button boxes predate the piano accordion used in Poland. If you ever heard Frankie Yankovic (the Polka King), you have heard Slovenian style polkas. And, believe me, there IS a difference.

But, I digress... I could polka before I could walk. Uncles and aunts often swooped me up to dance around the house with me in their arms. It's how they entertained themselves and their children... making music, dancing, singing-beautiful harmonic songs in Slovenian and English, talking and laughing late into the night. It did not occur to me that all this was happening in a shack with an outhouse, in Virden Illinois, on the other side of the tracks, in a place called "the patch.” It was heavenly to me.

My Grandpa Johann Sluga (aka John Schluge) was a coal miner; and strongly believed that workers had the right to organize and fight for social justice. He joined the radical Progressive Mine Workers Union (as did many Slovenes) after the United Mine Workers (UMW) kicked them out. They ignored an order to go back to work after the UMW sold out the workers. My father was a boy when he joined Grandpa and a caravan of miners in what became known as "The Battle of Mulkeytown", famous in Illinois coal mining history.

…the union leaders in the Gillespie and Benld area made plans for a huge picketing demonstration, announcing that no miners would be armed, and that the parade of autos into southern Illinois was to be well organized and peaceful. Some 10,000 miners left the Staunton area, the tunes of the local municipal band ringing in their ears.

The circumstances of what soon came to be known as the "Battleof Mulkeytown" seem clearly to have been a result of collaboration between the sheriff of Franklin county, state police who directed the caravan into an ambush, and militant Lewis followers among the local miners. Hundreds of high school boys, coal miners, and businessmen were deputized by the Franklin county sheriff, as well as two physicians who were told to treat only Franklin county people among the expected casualties.

When the head of the vast cavalcade reached U.S. Highway 51south of DuQuoin, the state police shunted the leading cars eastward on State Highway 14. When the leading cars crossed the Little Muddy River, a short distance from the village of Mulkeytown, the sheriff's deputies suddenly appeared ahead. Shots were fired, men were beaten, cars were pushed over, and tires were punctured. It was hardly a melee, much less a battle. There was no contest, for only one side was armed. The great caravan turned around, and headed northward. Five of the would-be picketers were casualties; none of the sheriff's deputies had been wounded. kentlaw.edu

Luckily, Grandpa was near the end of the caravan and was able to turn around and escape unscathed.

Grandpa was fond of saying he was a coal miner for 50 years, but only worked 25 of them. The rest of the time he was on strike. Grandpa went on strike for mine safety, and many of the worker rights we take for granted today. He and his union brothers also threw down the gauntlet to show their strength, if the mood was right, and a boss looked at them cross-eyed. They would turn their lunch buckets upside down and walk out. A Wildcatter; that was my Grandpa.

He wasn't an important man, not an influential man; but the struggle he and his brother miners endured, the abject poverty they lived in, have given the working\middle class the benefits we enjoy today. It saddens me to think we are losing many of the things he fought so hard to achieve.

If you are wondering what all this has to do with my summer vacation; I'm getting there, I'm getting there.

The mine owners recruited Grandma and Grandpa Sluga and other Eastern Europeans to work the jobs the “English” workers would not do. My Sluga grandparents arrived at Ellis Island and delivered to a little coal mining "company town" called Herminie 2, PA. It is in the bituminous coal country of southwestern Pennsylvania; about 3 miles down the tracks from just plain Herminie. He came over just about the time when Slovenes and other ethnic groups were starting social clubs and burial societies. In 1904 Grandpa joined the Slovenska Narodna Podporna Jednota (Slovenian National Benefit Society or SNPJ).

These societies provided the social and cultural life for Slovenes for decades and in some part, still do today.

Every year at SNPJ Pennsylvania, is the annual National Slovene Picnic. It is just 20 miles from Herminie 2. Local lodges used to have smaller picnics all over the country. I grew up going to the Slovenian picnic in Auburn Illinois every year; as did my kids. It's sad because most of the first and second generation Slovenes are gone; and so are the local picnics. The younger (my age), are fully integrated into the fabric of American life and do not see the need for such things.

My father, Leon, the youngest child of Johann and Maria Sluga’s eight children, is the last survivor of his generation. He is 87 years old and my mother, Emily, is 82. They had never been to the National Slovene Picnic, or Herminie 2.

I was longing for some extended time with my parents. So, my husband and I packed them into our minivan and set out for the picnic and Herminie 2.

It was a leisurely meandering through four states. We stayed off the interstate and took the winding "blue highways" all the way. We visited houses we lived in, in Indianapolis, and our farm between Knightstown and Spiceland, Indiana. We visited the livestock sale barn where my dad bought our first cow, Rosie and a host of other critters. We went by the old swimming hole where my brothers and I grew from tadpoles to excellent young swimmers. We stopped by historic sites, homes of long dead old friends, as well as roadside attractions. We visited the longest covered bridge in Ohio and took long looks at a couple of WPA projects. All the while, my parents regaled Mike and me with stories about their lives; secrets never before revealed; intimate chats, never to be forgotten.

Lest you think that we are all angels; we are not. Ok, my mother is about as close to being an angel as humanly possible. My father is almost as cantankerous as I am; and my husband will take the opposite side of an argument, just for fun. Nevertheless, those three days on the back roads of America, we all behaved reasonably well. I will count them as some of the best days of my life.

Our peaceful journey erupted into a party when he got to SNPJ, Pennsylvania. Bus loads of people came rolling in to local hotels from all parts of the country. Squeals of "Oh my god, it's so good to see you," filled the air! I hugged hundreds of people I did not know.

One woman, who heard my parents were coming, looked through her mother's albums for pictures of my parents as newlyweds. Others held them long and hard, saying, "We never thought we'd see you again." And, I felt at home. These people are my people. They even looked like me; if not me, then my cousins Shirley or Carolanne, or Eugene, or Greg.

The next morning we followed the Chicago Bus into the SNPJ Recreation Area, the location of the picnic. If I thought Slovenian culture was on life support; it is alive and well in at least one place, once a year. There were thousands of people, six musical venues, and Slovenian food galore.

All Slovenian food is high fat, high calorie, artery clogging, heart attack inducing and delicious. Our genetic material makes our bodies impervious to the hazards that mere mortals face when they eat fat. Klobase (sausages), golaz (goulash), sauerkraut, pork, stuffed cabbages, apple zavitek (strudel), and poticia. We eat "low on the hog.” These people grew up in poverty. If they even had meat, it was the lowest fattiest cut. They made food with the cheapest ingredients and learned how to make it tasty.

Mike and I left Mom and Dad so they could visit with their friends for the day. We hung out at the International Stage, where the Button Box is still king, and the open mic stage, where at any one time there would be 20-30 instruments playing all the old Slovene standards. It was a very full day and we didn't even stay for the fireworks. The second we got back to the hotel, we collapsed into our beds. We had to get a little rest. Herminie 2 was waiting for us.

Apparently, there hasn't been a cartographer in the area since Grandpa left a hundred years ago. None of the roads matched the map. We got hideously lost. Fortunately, we met a helpful stranger who led us to the town. (We interrogated her. Yes, she is the daughter of a Slovenian miner. “100% Slovenian”, she replied. Yes, she is a member of the local SNPJ lodge (#87). And, yes she is a native of just plain Herminie, not 2).

Cool; we were finally there: Herminie 2

We drove up and down every street, looked at every house and lot. Somewhere in this little town, my grandparents lived. Maybe the house was still standing. We stopped to ask a friendly man tending his roses where the mine used to be. He gave us useless directions. We thanked him and moved on. We talked to his neighbor and asked her where “the patch” was. She said, “You’re standing in it!”

“The Patch” is another name for the housing the company provided for “unskilled” workers. Our family never understood why the area grandpa lived in was called the patch until Mike, started researching mining history. After the mines closed, the company sold the homes, but the designation of "the patch" remains in coal mining town across the country. My Dad bought my Grandpa’s house in the Virden Patch for back taxes, during WWII, while in the Navy with a steady paycheck. It was the only home Grandpa owned.

There is a saying, "They used to build things to last." Who ever said that was not thinking of company owned coal-mining towns. The company built housing just long enough to house workers until the mine closed. In Herminie 2 that was 1938. Many of the lots were empty. The houses that remained were a testament to stubbornness. They were in moderate shape, most well painted, and couple had large vegetable gardens, or flowerbeds. Herminie 2 had seen much better days.

Looking at the houses solved a family mystery.

Grandma Sluga died when my Dad was six. Grandpa said when they came to this country he received company script, not money, as pay. It could only be cashed at the company store. He said the only “real money” they made was by Grandma taking in borders, 8 single men. They had to be Slovenes, because she spoke no English. It was hard to figure out where eight more people would live in the kind of housing Dad grew up in. However, Herminie 2 had big houses, no huge houses; boarding houses. So, Grandma ran a company owned boarding house. Mystery solved.

We were quiet in the van for the first time. Dad finally broke the silence softly, almost reverently saying, “I feel like I did 15 years ago when we (Mom, Dad and I) when to Slovenia and visited Litija [la-tea'-ya] (my grandparents hometown). My father and mother walked here.” I wiped tears from my eyes.

We continued to drive around the little town looking for the mine. The only helpful we received, was it was close to the old brick church. We did not find an old brick church, but we did find one brick building, roof collapsed into the first floor; first floor fallen into the basement. But, not far from that spot we saw the 8 ft high square fence that enclosed the mine shaft. Mike kicked up a brick next to the fence and gave it to my Dad, a souvenir of the backbreaking work his father endured down in that hole.

The “church” we knew from earlier research was the original lamp house. A lamp house had to be made of brick; a frame building would burn down too easily. It was the only building standing. There was a partial foundation of another brick building, maybe the mule barn; mules were considered more precious than workers. There is an old joke supervisors used to remind workers of their status. They would say, “Take care of that mule mister. I can hire another Joe to replace you, I’d have to buy a new mule… they don’t have offspring.”

We sat there a long time looking at the site. Grandpa came to this new world looking for a better life and landed here. He often said that if he had the money, he would have gone back; probably one of the reasons the company paid in script. But he didn’t. He persevered; he and his brother workers stuck together and created the 8-hour day, the weekend, vacation pay, job security, unemployment insurance, retirement benefits, health insurance, OSHA,and more.

They also reduced the gap between the rich and the poor. They were able to afford to send the next generation to college and escape the grinding poverty of their own lives.

We took the Interstate back. The ride home was quiet. Our emotions were overloaded. We arrived in Indianapolis and left my parents in the care of their three sons and a number of grandchildren. There, they celebrated their 60th anniversary by telling of the things learned about the family and our heritage.

Cross posted at: All in Our Family Blog

Look for Part Two, next week...

Monday, September 1, 2008

Rev James Dobson

The “Very Reverend” James Dobson, evangelical preacher, right-wing nut, and founder of Focus on the Family and his crony, Stuart Shepard conspired together; they wanted to ruin Senator Barack Obama’s acceptance speech last week at the Democratic National Convention.

So Shepard asked Christians to pray for "abundant rain, torrential rain ... flood-advisory rain." He adds, "I'm talking about umbrella-ain't-gonna-help-you rain ... swamp-the-intersections rain."

Turns out that Barack Obama gave his speech on a bright, bright sunshiny day. Was God smiling down at Obama?

Now, the first day of the Republican National Convention, Hurricane Gustav bears down on Louisiana, almost on the third anniversary of Hurricane Katrina’s destructive visit to the area; Hurricane Hanna bears down on the Florida, Carolina coastline, and Tropical Storm Ike (IKE!!) is following. It’s likely that an unprecedented three hurricane’s will slam into the United States this week.

Could it be that God in her infinite wisdom is sending voters a reminder of the appalling and criminal policies of the Bush/Cheney administration and that a vote for McCain/Palin, will only give us more of the same?

Or is it a reminder not to take the lord’s name in vain?

Wednesday, August 27, 2008

Gatekeeper: Open that Gate!

It's my first time. I am a deputy registrar; I have the power and authority to register people to vote. Our Springfield Action Team took on the goal to register as many people with disabilities as we can.

I'm drawn to history; fascinated by voting rights history and the struggle for the vote. I began thinking of the role of Registrars and Deputies played in people's history; most of it was not good.

Our Founding Fathers started the American Revolution with the battle cry, "No taxation without representation," because they wanted the right to vote for their own leaders, representatives and end British rule. Yet, when the war ended, who got the vote? Who got to pick their representatives? White men of means: landowners and merchants.

How'd they do it?

How did they protect newly found right to vote? They created jobs to shield the voting booth from, 'undesirables;' and gave them the misnomered title of "registrar". Gatekeeper would have been more accurate; someone who guards passage through a gate. It is the registrar and deputies that stand between a would-be voter and the voting machine.

For much of our country's history registrars were used to keep classes and races of people from voting. Those outside, that had no voice, were: people of color, women, poor whites, native people, people considered "simple" or "feeble", people who could not control their body movements; people who could not see or hear... us... people with disabilities. It was the registrar's job to keep people like you and me from exercising our right to vote.

The ruling class developed hurdles that a would-be voter had to pass to show himself worthy of the vote. There were: literacy tests, rules that a voter must be a property owner, grandfather or exemption clauses, character tests and criminal disenfranchisement.

These implements were the registrar's toolkit; what he used to deny the vote to black and native people, but also undesirable whites (people with disabilities and others). If the laws would not keep certain undesirables away, intimidation would. Law enforcement was not shy about keeping people from voting.

And now I, a woman with a disability, are one; a registrar, the gatekeeper. Ain't that a kick in their collective backsides!

How did it change?

If there is no struggle, there is no progress. Those who profess to favor freedom, and deprecate agitation, are men who want crops without plowing up the ground, they want rain without thunder and lightning. ~Frederick Douglass

It changed because people fought and struggled against those rich white land owners and merchants. They agitated and plowed; the seeds of change grew. Grassroots movements by African Americans and women, and even some forward thinking white men fought to get it changed. I witnessed people being jailed, beaten, and murdered for their right to get past the gatekeeper for the opportunity to vote. And, after years of struggle, constitutional amendments and civil rights legislation changed the law of the land; it became every person's birthright to be able to vote.

Now, I am not so naive to know that voting fraud, voting manipulation and voter intimidation has happened to voters in every election since reconstruction. But, I have a hope; the pendulum in swinging.

As people with disabilities we still face barriers; which means we will still need to agitate and plow. Accessible voting places, booths, machines and access to print are some of the obstacles we still face in some polling places. Besides that, we have personal barriers we must struggle against.

We are the last of the disenfranchised to take advantage of the power to the vote. The percentage of people with disabilities who vote is abysmal compared to other oppressed people's voting percentages. We must believe that our voices and votes count.

In a 2002 article in the Civil Rights Journal, a journalist noted that people with disabilities were the sleeping giant of American politics. We've yet to awaken the giant. But it's not too late.

The New Gate Keepers

Now registrars across the nation, north, south, east and west have a new job description. Now their (my) job is to throw the gates open as widely possible ... Hell, let's just take the gate off the hinges and tear down the fence while we are at it. We now welcome all would-be voters to the democratic process. All of them; all of us.

Instead of keeping people from voting, our job is to aggressively find people who are not yet registered; help them through the process; make sure their simple paperwork is in order; get their signature and, that's really about it.

When I think about the fact that it's been in my lifetime that most of these changes have occurred, I get chills. Voting is a privilege given to me by generations of people who knew the ruling class was wrong and faced them down. I am honored to be a registrar and voter in their memory. If that sounds a little sappy, or bourgeois, so be it; I feel connectioned to them.

Register to Vote.

If you are already registered, consider becoming a registrar. It takes about 15 minutes at your county clerk's office. Or, volunteer for a political campaign; work on accessible transportation for your brothers and sisters on Election Day. Make sure you know about early voting and tell your friends. Make phone calls. Send emails and letters.

And for sure, head to the polls on Election Day. Let politicians see the giant is awake, bright-eyed and voting.

Tuesday, August 19, 2008

Grassroots: Reseeded*

Over the summer I've been working with others to reorganize a local chapter of the Coalition of Citizens with Disabilities into a grassroots Action Team; I feel invigorated. I've decided that grassroots work is just what one needs to recharge your advocacy batteries.

When I was a young activist, I was unsure about what I was doing and if I was doing it right. All I knew was that I was the mother of a child with a disability; I had no choice but to fight for her future. I had a cause. I met a small number of moms and others, who were ready to fight too.

We met a lot of success. It does not take a whole lot of angry moms to scare city fathers. It felt good bringing the struggle to the Board of Education and to City Hall; or wherever we had to go to level the obstacles in my child's way. Like many of you, I learned a lot in these early struggles and we made improvements for all people with disabilities.

Those experiences changed my life. I became a professional advocate. I got a job with an advocacy organization. I was appointed to boards and committees. I sat on advisory groups, planning committees, accountability teams, and more.

I got "a seat at the table" and became a bit more "respectable." There is not a thing wrong with having a place at the table. We need good people at the table negotiating and looking out for our interests. But for me, it is boring. My boss jokingly told me I had "poor meeting behavior."

She is right. At meetings, people sound a bit like Charlie Brown's Mom. I interrupt. I get frustrated with the process. Restless leg syndrome takes over my lower quadrants; I have to get up and walk around; I take too many trips to the bathroom longing for graffiti filled stalls to stimulate my brain.

I know this is supposed to be an honor. Someone thinks your work is good and you get invited to participate at a higher level. However, I have decided that, it's not me.

The realization took seed when I attended the ADAPT action in Chicago this year. We took over the entrances to the American Medical Association (AMA). My job, along with a couple dozen others was to block the entrance to the underground parking ramp. We sat there for hours while the organizers negotiated with the AMA. No words can express the utter joy I felt sitting there, blocking that parking garage entrance. There was a camaraderie I hadn't felt in years and didn't realize I was missing.

Later, I went to Alton IL with F.R.I.D.A. to participate in a memorial service & march for Dorothy Dixon. Dorothy, who had a developmental disability, was tortured for months by her caregivers until her body could no longer take the abuse and she died. We marched from IMPACT CIL to her home, raising our voices and fists, vowing to let no more Dorothys die inhumanely.

The Action Team has been the icing on the cake. We've been very successful on several initiatives we started. My plan is to write about them soon and publish them here on my blog.

So for me (and maybe you?) it's back to basics, back to the grassroots where we struggle because we have too. Back to the grassroots where we look forward to meetings instead of dread them. Back to the grassroots where the struggle for change takes seed and the impetus for change originates. I've found my niche again.

I'd like to thank my husband, Michael, for helping me organize and edit this piece.

The title of this piece, Grassroots: Reseeded, is a shortened version of the title of an article that appeared in The Nation, Grassroots Reseeded: Suites vs Streets. I loved it so much, I could not think of anything better. So, I give them the credit here.

Wednesday, August 13, 2008

White Skin Privilege Survey

Readers, While I am enjoying every minute of my summer hiatus, I thought this research was important enough to take a break from Pina Coladas and bon-bons to put it on my blog and encourage you to participate. I hope you do.

Have a great rest of summer. I'll be back soon. ~ Cilla

Dear sir or madam,

Hello, my name is Shawn Dimpfl, I work at the Center for Capacity Building for Minorities with Disabilities Research (CCBMDR) at the University of Illinois at Chicago. I am currently conducting a study with Dr. Fabricio Balcazar and the CCBMDR about perceptions of white privilege and discrimination. For the study, you are asked to fill out a five to ten minute long survey with questions about yourself and your perceptions and experiences with racial privilege and discrimination. If you would like to participate in the study you can click HERE. It would also be greatly appreciated if you could forward this email to any friends or family members over the age of 18. If you have and questions, comments, or concerns please feel free to contact me. Thank you for your time.


Shawn Dimpfl
312-413-1806 (phone)
312-413-1804 (fax)

Sunday, June 15, 2008

Dear Adam and Steve

Dear Adam and Steve (or Andrea and Eve),

Two down and forty-eight to go! Gosh, I hope it only gets easier for you to marry, as other states begin to recognize your equality of citizenship. We still have a way to go, don’t we? But, I want to celebrate with you tomorrow (Monday, June 16, 2008) as the second state in our Union begins celebrating your union.

I am livid, however, that it is taking so long. When I think of the touchstones of liberty and equality that anchor US principles, it seems we, as a nation, should be beyond this.

At first, liberty and equality applied only to white, land owning adult males. Through struggle, others began claiming the rights; and the promise of liberty and equality expanded (though not completely) to African-Americans, women, people with disabilities, the GLBTQ communities. You would think by now, our collective conscious would be raised to the point it would not have to be so hard to claim our promise.

It appears that some people need to think of themselves as superior to others. Zealots. People, who apparently hate the ideas of liberty and equality across the masses, maintain too tight a hold on civil law.

If some people’s religion makes them believe that marriage is exclusively between a man and a woman, the world is flat, or they did not descent from apes; they can have at it. Marry only men and women and sing your own tune. I do not care! Let religious institutions make its own rules; we call that religious freedom.

However, we live in a country bound by laws, not religious rule. If you disagree, move to some country that is proud to be a theocracy. Love it or leave it!

The California Supreme Court struck down some of the rationale for continued bigotry around gay marriage. I am hopeful that other states will do the same. The court said that civil unions and marriages are not separate and equal; they declared that a civil union is inherently unequal.

I suggest that if states do not want to acknowledge, accept, or perform gay marriages, they should not perform any marriages… period. Every couple in that state should have a civil union. If a state wants to perform marriages; then everyone in the state should have the right to be married. A land ruled by civil law should treat its citizens the same; We call that equality.

Anyway, I am writing to congratulate you on your upcoming nuptials. I wish I were there to share them with you. Unfortunately, I cannot travel that far with my limited vacation time.

My heart is happy. Mike and I share your joy. Be happy and live long in the glow of your love.

With love and affection,

P.S. Be sure to send me pictures!!!

Monday, June 2, 2008

What Happened to Ricky

This video accompanies an article, written by Clare Ansberry, appeared in the Wall Street Journal, May 31, 2008. Read the article here. It's a very sad commentary on what has and is happening to people with disabilities.

Tuesday, May 20, 2008

Smells Like Team Spirit

While on the New York Times website, I was scrolling through a list of articles and found one titled, "The Amputee Advantage?" It certainly caught my attention. Using "THE" in the title is definitive; there is an advantage. Then it's followed by a question mark; indicating a problem, difficulty or some query. Interesting... I clicked it.

The story was about Oscar Pistorius and his recently won his fight to try out for THE Olympics. Oscar is a double amputee and sprinter from South Africa. Four years ago he competed in the Paralympics, but this year he wants to compete in the other Olympics. Officials worried that his state of the art prosthetics gave him an unfair advantage.

Boy, give a guy a leg up (pun intended) and his able-bodied peers stand up and scream foul! It's foul alright!

Oscar runs using a prosthetic leg called a Cheetah. The manufacturer advertises it as a flexible foot prosthetic made with carbon fiber; it offers a person strength and flexibility. It's energy efficient; a user can walk further and longer. It offers more stability than a traditional prosthesis; and it gives the person a "natural" gait. You know, it works like a leg and foot; however, it does not look at all like a leg and a foot.

A picture of Oscar Pistorius sitting on a track, changing from his everyday prosthetic legs' to his running legsPhoto from the NY Times

And here is where, I think, the bigotry enters the scene. Since WWII, amputees have been put in a "normalized" medical rehab model of service delivery. Initially, legs were not very comfortable, stable or efficient, but by God, they looked like legs. Society thought that was more important than function.

Over the years the prosthetics improved to the point where they can be adapted to a particular activity like running, walking a fashion show runway, climbing, and dancing (even in dancing there are variations; legs that are bouncier for dances like the jitterbug and legs that are a better fit for a tango). This is somehow disturbing to the general public. They are saying, "These amputees are getting kind of uppity."

We've moved on. They have not. We have defined ourselves outside society's comfort level; not "their way" any more. So, we attack the environmental barriers we face. Someone invents Cheetahs so we can use them if our goal is to run like the wind, which is exactly what Oscar Pistorius is doing. It's no advantage; it's opportunity.

I first saw a Cheetah, or something similar, while enjoying one of my guiltiest of pleasures... reality television. A young woman, Sarah Reinersten, and her boyfriend competed in the sixth season of The Amazing Race. She battled along with the other adventurers; scaling walls and eating disgusting entrails. Certainly without the Cheetah, she would have been sitting on the couch watching it all, like me. But with it... well, she made me very proud. She didn't win. She and her partner went out 6th. But during her time, she came in first on two segments of the race. She was there to compete and that is what she got to do.

And that is what Oscar just won; the opportunity to compete. It doesn't mean he is going to Beijing; it means he gets the opportunity to try out for the team. He still has to shave an entire second off his time to qualify (which is a long time in sprinter time).

If he makes the team and goes to Beijing I'll be there, in front of the TV, rooting for him. No matter what color jersey he wears, or country he runs for, Oscar is on my team and we are part of the disability nation!

Tuesday, May 6, 2008

Standing in the Intersection

Home is not where you live, but where they understand you.
Christian Morganstern

I just had the best week ever! I attended the Coalition of Citizens with Disabilities in Illinois (CCDI) annual disability rights conference here in Springfield IL. It is my favorite three days of the year. I look forward to it and enjoy it more than the 4th of July, Thanksgiving, and Christmas all rolled into one.

About 400 people with disabilities across the state come together to learn, play, and fight for our rights (and occasionally with one another).

I feel at home there. I have grown older with many of them. We've fought battles and supported one another for a long time. We're a little less crazy than we were; we leave the parties first now; our "hook-ups" are not as sexually charged as they once were. We now watch the young ones feel the music and booze course through their bodies, only occasionally getting out on the dance floor to "show 'em how it's really done."

While I sound nostalgic for the good old days, I am not. Today I feel supercharged about the many young people at the conference. They were "on-fire" with enthusiasm, determination and expectations. My spark grows brighter when I am with them.

For many, it was their first opportunity to be in a crowd of people with disabilities. One young woman summed it up like this: "who knew there were so many people just like me like me?" She felt at home too; maybe for the first time. During our march on the state capitol building, past the statues of Martin Luther King and Abraham Lincoln, she yelled her chants louder than anyone and pumped her defiant fist in the air as strongly as any Olympian. I swelled with pride for one of our own.

It's a diverse crowd of people sliced anyway you want: by ethnically, age, gender, sexual orientation, and of course, disability. It's the tie that binds us together... and I love it.

Now I stand at the intersection of the best week ever, and the 37th disability blog carnival addressing disability identity, culture and pride, thanks to Ms CripChick. I get the opportunity to analyze what I just experienced.

First and foremost, I am very hopeful about our movement after attending the conference. I kept thinking about Margaret Mead's famous quote...

A small group of thoughtful people could change the world.
Indeed, it's the only thing that ever has.

Changing the World

Really, that's what our coming together and building a cultural identity is all about; whether it's a wheelchair rugby match or an ADAPT Action or my beloved CCDI Conference, it's always political.

A major reason to have a disability identity exists to redress grievances. It allows us to:

  1. Identify ourselves in the way we choose, not by society.
  2. Determine the language that defines us.
  3. Defend ourselves against attacks on our community's honor or dignity;
  4. Address the very real pressure against the interests of our community; and
  5. Gain advantages others enjoy.

There are probably more reasons too; but for me, it is the civil rights aspects of our cultural identity that are critical to our success as a people.

Disability Pride

Pride in our disabilities begins when we see people like us, who do not define themselves by cultural stereotypes, and we begin to see ourselves as having value.

Disability Pride grows when people abandon the medical terms that previously defined them and service delivery systems that patronize them. It grows when they understand the barriers they face are not personal failures, but systematic political disenfranchisement.

Disability Pride is the result of collective action as well as individual achievement. We are building a disability nation, a home for ourselves, a place of understanding and support.

Friday, May 2, 2008

Knowledge (Not Reading) is Fundamental

The "No Child Left Behind Act" has emphasized reading to the detriment of our children’s education.

I have recently been working with a few families whose children have reading disabilities. They are struggling to keep up with their non-disabled peers in all their school subjects, sometime students are several years behind their grade level. These are bright kids, who do not read well.

They have the ability to learn, just not by reading books; But, because they cannot read, they are failing history, physical and social sciences, mathematics, literature, and other classes. It is a ridiculous failure of our educational system that leads children with disabilities to drop out of school and become part of the under classes.

What is the purpose of teaching history? Is it to read text, or to learn the subject matter? What is the purpose of teaching classic literature? Is it to read the words, or understand the beautiful language and to take the journey along with the author? Social sciences help students learn about human interactions; should that information belong to only children who read?

Obviously, if a child can learn to read, he/she should learn to read; do it in a reading class. If a student is having difficulty reading, we should be compensating that disability in all other classes, without exception.

The truth is some people will never learn to read, despite chapter one reading programs, literacy or other training. For them, it is imperative we provide material in an alternate format accessible to them. Why educators are so reluctant to support learning, is just beyond any logical reasoning.

The National Instructional Materials Accessibility Standard (NIMAS) guides the production and electronic distribution of digital versions of textbooks and other instructional materials to accessible formats.

Here's what they have to say about their very important work:

The Need for Flexible Alternatives to Print

For many students with disabilities, the limitations of print technology raise barriers to access, and therefore to learning.

For students who cannot see the words or images on a page, cannot hold a book or turn its pages, cannot decode the text or cannot comprehend the syntax that supports the written word may each experience different challenges, and they may each require different supports to extract meaning from information that is "book bound." For each of them, however, there is a common barrier - the centuries-old fixed format of the printed book...

Very few students with disabilities presently have access to the accessible books they need. There are several reasons for that. In some cases, the problem is technical - schools do not have the technology they need to properly provide accessible versions to students, even if they had such versions. In other cases, the problem is ignorance - many teachers and schools do not understand the issue of access or the potential solutions that are available.

But for many students the problem is a frustrating distribution system; students can't get the accessible materials they need in a timely fashion. Present policies and procedures for disseminating accessible materials are archaic and inefficient, raising barriers rather than opportunities.

If knowledge is power, why are educators trying to keep children with disabilities powerless?