I hope for a happy exit and I hope never to come back.
--the last entry in the diary of Frida Kahlo, 1954
She too lived in pain because of disability. Someone once asked her what to do with her body after she died, she replied, "Burn it…I don't want to be buried. I have spent too much time lying down…Just burn it!"
Some days, I know just how she feels.
Saturday, March 21, 2009
I hope for a happy exit and I hope never to come back.
Friday, March 20, 2009
I am writing this letter for my sixteen month old granddaughter, Sabine. Some letters are still hard for her to write.
She’s very smart and , as is her mommy, Suzi (my daughter), despite the fact they called me at 5:15 AM because Sabine wanted me to write you immediately.
Apparently, Sabine and her Mommy were up late last night because molars make a sixteen month old mouth sore, and the rest of the body grumpy. Sabine said she was watching you on television; she thought you looked very nice.
However, she asked me to tell you that even though you were the “bestest” president of her whole life; she did not like your comments on Jay Leno about the Special Olympics.
First, she wanted me to let you know that in the Special Olympics, it does not matter what your score ends up being. What matters is that you tried your best. Trying is the most important part, especially if you are learning something new. Sabine says she’s trying to learn many new things and isn’t good at all of them yet, but she still enjoys trying.
Sabine says you have to be mentally ready for the game. So, if you tried your best, and still didn’t get a good score, unless you are proud of your efforts, then you are not even allowed to be a special Olympian. So, work on that. Be proud of your best. Sabine knows this because some of her friends and family members have disabilities.
Sabine said she knows you are very busy with two wars in the middle east, the second great depression, a banking crisis, possible past presidential war crimes, a shrinking economy, the lack of a cohesive health care plan, Veteran issues, and a crumbling infrastructure; however, she thinks you need to take a minute or two to talk to Sasha and Malia about this, just in case they got the wrong impression.
Lastly, Sabine wanted me to tell you that, just last night Grandma told her that humans are 99.9% the same, no matter how they look, or talk, or hear, or walk or think. Grandma told Sabine to judge a who might be person different from her, not by their bowling score, but by the content of their character.
Sabine (with Grandma's help)
P.S. Grandma wants me to tell you she also thinks you are the best president of her life and has hopes you will be the best in the life of our country too. Keep up the good work and watch your language. :)
Crossposted at: Suzi & Sabine's Notebook
Sunday, March 15, 2009
Wait a minute! I learned today that AIG (American International Group), the same company that took more than $170 billion in taxpayer bailout money… my money; your money through our Federal Reserve System, now plans to give executive bonuses to the tune of $165 million. The same people that took AIG to the brink of collapse are rewarding themselves for their unimaginable mismanagement.
Tim Geithner, the Treasury Secretary pretended to be outraged on the Sunday morning talk show this weekend. He said he was foot-stomping mad and demanded that AIG not give the money. Unfortunately, he sighs forlornly, these bastards are going to get their money because lawyers said that AIG is contractually obligated to pay it.
Oh really? Contractually obligated, ey? Tell that to the auto worker in Detroit. Tell that to the retirees or those close to retirement, who paid into pension plans their entire work life, and had them guaranteed in their contracts, but will not receive them because the company claimed it could no longer afford it, and the courts backed them up.
What makes a contract between millionaires sacrosanct while contracts between corporations and their employees can be ripped into little pieces?
A while back I heard a pundit say that this was a war between the people who showered before work and those who showered after. It is the absolute truth. And our “liberal” new administration has taken its stand with those who shower before work. Geithner can act and shout as loudly as he wants on television. However, unless the government does something about it, it’s hollow blather. AIG bigwigs should be worried about joining Bernie Madoff, rather than collecting their bonuses.
Wednesday, March 11, 2009
I am home sick today; but still got three calls about the story below. While I can’t write much between my naps on my road to health, I felt I had to write something. My callers all used the word “shocked” in each of their conversations.
The only reason this story saw the light of day, is because some stranger found a lost cell phone and turned in to the police. There was no state oversight, no eager reporters, no nosey parents, and no outraged staff.
I’m not shocked; I am not even surprised. I am sickened. This is just the kind of thing that happens when people are locked up and dehumanized. This is exactly what the parents at Howe Developmental Center fear for their children and don’t realize that the more “institutionalized” the setting, the more dehumanized are its prisoners.
For those who live outside Illinois, Howe Developmental Center is at the forefront of the struggle to shut down Illinois state-funded institutions for people with developmental disabilities. Over 30 suspicious deaths have occurred at Howe in the last few years.
Shocked… sadly no.
Here is the article from the Dallas Morning News
Corpus Christi State School investigated after 'fight club' videos of residents found
12:00 AM CDT on Wednesday, March 11, 2009
By EMILY RAMSHAW / The Dallas Morning News
email@example.com / The Dallas Morning News
Robert T. Garrett contributed to this report.
AUSTIN – Gov. Rick Perry suspended admissions to the Corpus Christi State School on Tuesday after police allegations that profoundly disabled residents had been forced into "fight club"-style battles by the employees hired to care for them.
Authorities say vivid cellphone videos show Corpus Christi State School staffers goading young mentally disabled male residents into physical altercations.
Authorities say vivid video footage captured on cellphone cameras shows staffers goading young mentally disabled male residents of the institution into physical altercations, then shoving them at each other until fights ensued.
The investigation into the 11 current or former state school employees identified in the videos is continuing, and police say it's not clear whether they were betting on the outcome of fights or uploading them to the Internet. While the video indicates some residents were hurt in the fights, none sustained serious injuries. Officials would not say how many residents were involved.
"Workers were staging fight clubs with the residents for their own entertainment. It's awful abuse – some of the worst I've seen in over 30 years," Corpus Christi police Capt. Tim Wilson said. "I've heard of isolated incidents before, but what's most appalling is that it's obvious this is organized."
Arrests could come later this week, the local prosecutor said.
State school overhaul
At the governor's direction, officials with the Department of Aging and Disability Services halted new admissions to the Corpus Christi State School on Tuesday and ordered that video cameras quickly be installed at all 13 institutions for the mentally disabled. They also ordered more security officers and overnight supervisors for the facilities, as well as staff to monitor the cameras.
The revelation of the videos, first reported by The Dallas Morning News, comes as lawmakers are debating how to overhaul the state schools for the disabled, which the U.S. Department of Justice accused of systemic abuse and widespread civil rights violations late last year.
On Monday, the Senate unanimously approved a bill to protect state school residents from mistreatment – a measure deemed an emergency by Perry. His chief of staff, Jay Kimbrough, who traveled to Corpus Christi on Tuesday evening, said he planned to stay until safeguards were in place.
"This is exactly why we wanted this to be an emergency priority," Kimbrough said. "There are things we can do immediately. We need to implement as much of this as quickly as possible."
Administrators at the Corpus Christi State School did not return phone calls.
The brawls are captured on repeated videos filmed during 2007 and 2008, along with one that appears to have been taken last month, authorities said. Wilson said they show "staged events" where residents push, kick and punch each other, then have their arms raised in victory when they "win."
The videos, which also have sound, were discovered on a cellphone that was turned in to an off-duty police officer at a local hospital after being found lying in the road. The videos were so clear that investigators were able to determine that they were captured in public "day rooms" at the state school, which is home to 350 residents.
Democratic Rep. Abel Herrero, whose district includes the 100-acre Corpus Christi State School, said he was told that the fight clubs occurred during an overnight shift.
The Corpus Christi allegations are "disgraceful, unacceptable," said Rep. Patrick Rose, a Dripping Springs Democrat who has authored state-school safety legislation and a separate bill to close some of the institutions in favor of community living. "It provides further proof of the fact that we need greater oversight and accountability in our state school settings."
Wilson said police learned of the cellphone last week and opened a joint investigation with the Texas Health and Human Services Commission's inspector general. He declined to say how many residents were involved.
Seven current state school employees in the videos have been put on emergency leave pending the outcome of the investigation. Four other employees identified in the videos no longer work for the state school.
So far, no arrests have been made. Nueces County District Attorney Carlos Valdez said his office is taking the allegations very seriously, and expects police to seek arrest warrants late this week.
The state school safety bill, which still must be approved by the House, would appoint an independent ombudsman to oversee all abuse and neglect investigations in Texas' institutions for the disabled. It would require fingerprinting, background checks and random drug testing of all state school employees, and would install security cameras in all public areas of the facilities – something Kimbrough says might have prevented the Corpus Christi situation.
Rep. Solomon Ortiz Jr., D-Corpus Christi, called the state school case "unbelievable," and said lawmakers have been trying for years to bring attention to the state's dismal care for the disabled.
"We've been sounding the alarms," he said. "Unfortunately, it took a long time to get the leadership of Texas to focus on this issue."
Staff writer Robert T. Garrett contributed to this report.
Tuesday, March 10, 2009
by Cilla Sluga & Mike Meiselman
It’s unusual to have such an in-depth conversation with a total stranger. But, we liked her almost immediately. She was tall, in her twenties and had a cute three cornered smile. She asked pointed questions and was not the least bit interested in chit-chat. Pretty remarkable since Jen was our server at a semi-fast food restaurant.
We’re not quite sure how the conversation started; however, within no time at all, Jen was asking us about our politics. She didn’t believe we were as lefty as we claimed. She asked if we knew any leftist anthems. Mike obliged her, there in the small restaurant dining room, by singing The Internationale, clenched fist in the air.
Eventually, she wanted to know what kind of activism we were currently involved in; when we told her we were disability rights activists, her eyes widened. Her sister had spina bifida.
Jen, was not just our server, it turns out she was the restaurant manager. She asked if our group needed money. What? Someone was offering to help our organization with cash. We tried to tell her we weren’t an official 501(3) C; that we probably weren’t eligible. However, she would not be deterred. She said, “If we can have a fundraiser for the local high school cheerleaders, surely we can have one for an organization that works for the rights of disenfranchised people.”
So, we promised to provide her with the information she required.
A week or so later, we took requisite documents to the restaurant and she sat down with us again. Her intensity and inquisitiveness had grown. She confessed she was not much of an activist, but was angry about a lot: School of the Americas, the wars, the budget crisis, poverty, racism, bigotry, and Rush Limbaugh to name a few.
She wanted to know what our group was doing right now. We told her about projects great and small. We talked about an accessible fishing pier at the lake. We told that the statue of Lincoln at the state capitol was still inaccessible, on this the bicentennial of “the great emancipator’s” birthday. When talked about involuntary sterilization act being debated in the state legislature; and other mutilations that children with disabilities have gone through, all at the hands of parents and guardians. She cried tears of anger and sadness.
She reminded us of others we know. They care, deeply, about the world and its people, but feel powerless to change it. She said she felt unable to change things… so rather than stay angry, she confessed, she put it out of her mind as much as she could.
We told her that anger was a good motivating force, and to use it; but it would not sustain her. The only real antidote to frustration and/or anger is activism. Jen said it was all so overwhelming; how could she just pick one or two things when so many things were wrong?
Both of us also remember feeling that way. The frustration Jen and others feels is like burning rubber off the tires; it makes a lot of smoke, just doesn’t get you anywhere. We found progressive groups of people and started working together to change things. We felt less angry because we were actually doing something. In fact, it was invigorating.
One thing you quickly learn once you start fighting back is that is that the enemies turn out to be the same entities. If you are fighting for a clean environment, you learn that the people behind the pollution are also responsible for derailing regulations on Wall Street. The same forces that profit from keeping institutions open are the same ones who profit from prescription drugs that are priced out of reach for people of poor and moderate means. They don’t want regulation either… they want profits. They don’t want equality, they want it all.
The ruling class wants us to fight with one another for limited resources so we don’t focus on them and their system of wealth for the rich and crumbs for the rest of us. We must continually fight, not just for the daily needs of our people, but also to knock chunks of power out of their hands and put it in ours.
She still wasn’t sure. We believe there are a lot of people in the same position. For them the most difficult step of a journey isn’t the first one. It’s more like the second or third step. Once you stick your toe into an issue, you can feel the power on the other side. What usually happens after that; people get scared, put blinders on and refuse to look at injustice any longer. It also requires us to examine our system of equality, wealth distribution and privilege. Once you start doing that, you get called names, like “red” and “socialist”. It is enough to scare most people away.
We want to say do not be deterred. Take Barack Obama’s story about grassroots organizing in Chicago. He saw the poverty; he knew the issues; he spoke to the people; yet at his first meeting, no one showed up. That’s pretty devastating. He was disheartened and thought about quitting. Then he thought that quitting and realized that wasn’t going to improve anything for the people he cared about. He felt he had no choice to but to try and try again. He succeeded in building leadership from the community where little existed before. That enabled him to go on to create or sustain other social movements.
Find your passion. Bring about change in your neighborhood, or city. Fight for women’s rights, or cleaning up the superfund site down the road, or racism, or disability equal rights. Change a neighbor, or local council’s idea about how to deal with people who are disfranchised and you are changing the world.
Crossposted at Magitator.
Saturday, March 7, 2009
What are we teaching our children when we expect them (even those without disabilities) to do what they are developmentally and physically not ready for. Children are active creatures. It is how they interact with the universe: they fidget, dance like no one is watching, wave their hands wildly when they talk. It only makes sense that a standing desk can help burn off some of that energy and give students a new way to interact with their studies.
I am hooked on this idea. Maybe it should be part of the stimulus package: A new jobs bill for mom and dad; and a standing desk for every student. Obviously, for students who cannot stand or prefer to sit, traditional desks should still be available.
I did an unscientific study of about 30 high school freshmen. I showed them a picture of the standing desk and stool and asked which they would prefer. ALL of them wanted the standing desk. I really do understand.
I was a great “fidgiter” in school; still am. I am forever clicking and swirling pens, shaking my leg, rapping fingers on a table, toe tapping, playing with the phone cord, doodling, playing with phone settings, and losing hours playing Bookworm. I cannot just watch television, I must be typing, or playing a game, or wrestling the dog or some other thing. It drives my husband crazy when we are lying in bed and I pull up the laptop to check mail or play scrabble, while we are watching Keith or Rachael. He asks, “Did you see/hear that?” I say “yes” and give him a short synopsis to prove I was listening. I am writing this now, as we are driving to
Why is sitting to learn the educational standard? What kinds of adults are we raising if we tell them that they must sit with their hands in their laps? My second purely unscientific analysis in this blog is as the industrial age belched onto the scene, employers wanted workers to be docile, obedient, and follow orders. They wanted workers to sit and do repetitive tasks without leaving their station. Sitting in school facilitated all of that and the education system trained the students the way the industry wanted.
Before the industrial revolution (I actually did a little research), standing desks were common. Think “The Christmas Carol.” Both Bob and Ebenezer stood while doing their bookwork. They had stools they could use if they needed to rest a bit but mainly they stood. For two centuries, (18th & 19th), standing desks graced the homes and offices of the rich. Only the poor had to sit and slouch.
The study of ergonomics is a field of study that grew mainly because of sitting; time spent working on computers, driving, watching television and repetitive motion. Ergonomic experts analyze the way we work, and how we can do so more effectively and with less stress. Here is what one website on the subject had to say about stand-up desks:
It turns out that the stand-up desks of history are extremely good for reducing injury. Standing doesn't allow the leaning and slouching that is possible in a seated position, your back and neck remain straighter, and a properly positioned monitor allows users to look straight ahead, minimizing neck movement and strain.
Working while standing does provide more energy, and eliminates the afternoon doldrums almost entirely - in fact, some proponents use their stand up desks only in the afternoons, finding that sitting through the morning appeals to them.
Adults without known disabilities were the focus of this study. It appears to me that something as simple as a stand-up desk could actually save a child’s academic career if it works for him/her.
It’s IEP Season
As parents and children get ready to develop plans for students who fidgit or become easily distracted, consider a standing desk. They are rather cheap at about $250 each. However, before buying a desk consider these “trials.”
Cinderblocks – They are cheap and versatile. Use cinderblocks, bricks, or wooden blocks to lift a conventional desk. Ask a janitor or handyperson to build a little jig for the rocking arm.
Podiums are ready-made workspaces for standing. Borrow one from a church, convention center and see what happens. Most students will need more room than a traditional podium; but it can give an IEP team some idea if it will work.
Stools give students the option to rest tired feet if they want to, but they still have the option of the fidget bar. Did I mention I love the fidget bar?
Probably the oddest thing about my new standing desk fetish is that I could never use one. I can only stand for a few minutes without extreme leg pain.
However, I am not thinking about me, I am thinking about all those children (me included) who year after hear from their teachers that their behavior is disruptive, that they do not pay attention, and they are not compliant. They hear it so often they give up and drop out.
I do not know how I am going to do it; but I have decided I am going to become a one-woman zealot about standing desks.
If you want to learn more, Google, “standing school desk”. There’s a wealth of information and also places to buy them.
Tuesday, March 3, 2009
Involuntary sterilization in 2009: It seems nearly impossible to even conceive that such a thing could still be happening. Yet it is; with regularity; and with state approval. But we have a good chance to end it in Illinois. Sign the petition here: http://www.petitionspot.com/petitions/hb2290/.
Here is background information from F.R.I.D.A.
In Illinois, the Probate Act of 1975 outlines the general duties for guardianship of an adult with a disability (i.e., a ward). However, currently there are no guidelines for when a guardian seeks to have the ward sterilized. As a result, the involuntary sterilization of people with disabilities can be abused. It is possible for a guardian to violate a person’s basic right to not be sterilized without knowledge and/or consent. Most states in the U.S. have due process protections to prevent this extreme, irreversible and dehumanizing situation… but unfortunately Illinois is still one of 16 states lacking any protections against sterilization without consent.
We need to let Illinois legislators know that we want to end involuntary sterilization now by pushing the passage of H.B. 2290!
H.B. 2290 updates the Probate Act of 1975 by adding guidelines requiring that the guardian must file a motion to request the court’s authority to consent to the sterilization procedure (except when a procedure is necessary to save the ward’s life or to prevent harm to the ward); and other due process protections to prevent the involuntary sterilization of a ward without the ward's knowledge or consent. For example, the amendment requires that there be a determination of the ward's capacity to consent, and that the decision of the ward be respected.
Many parents of adult children with disabilities are not the legal guardians of their children (although they may think that they are), and have NO legal authority to seek the sterilization of their adult children. However, physicians unaware of this fact may agree to do a sterilization based on the parent’s consent, without realizing that doing so is illegal.
Sign this petition to show your support of H.B. 2290 and the end to the involuntary sterilization of people with disabilities in Illinois!