Big Noise

Healthcare for All

2009-04-06T20:41:00.003-05:00

If there was ever a cry for universal single-payer, this is it!

Boyfriend With Health Benefits - Watch more

Frida Kahlo

2009-03-21T09:02:00.010-05:00

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.

Dear Mr. President:

2009-03-20T10:53:00.007-05:00

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.

Sincerely,
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

Bailout: Bonus Bologna

2009-03-15T19:30:00.004-05:00

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.

DD Fight Club Predictable

2009-03-11T17:59:00.004-05:00

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
eramshaw@dallasnews.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.

'Disgraceful'

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.

Those First Few Steps

2009-03-10T19:50:00.003-05:00

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.

Stand Up for Education

2009-03-07T13:10:00.002-06:00

“Sit down and be still,” might be the most commonly heard phrase in elementary schools everywhere.

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.

Look at the picture to the right. At the bottom of the standing desk is a swing bar. A child can put his foot on the bar and swing it back and forth as he learns. For children who need to be active, this little bar can keep them active, without being disrupting.

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 Chicago. I am a walking, talking, human-doing, not a human-being. But… I digress, as my kind frequently do.

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.

Involuntary Sterilization in Illinois - Do Something

2009-03-03T13:11:00.003-06:00

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!

Mistakes, I’ve Made A Slew

2009-02-19T16:32:00.004-06:00

I’ve been involved in the disability rights movement for a little over 30 years. If I had to say one thing about that time it is this: it is a good thing you can’t get thrown out for making a mistake.

I’ve gotten angry when I should have stayed calm; and I stayed calm when the situation called for rightous anger. I’ve dominated meetings, held my tongue, walked out, stayed, joked, was too serious, took things too literally and not literally enough. I’ve cried tears of sadness and sorrow, when i needed to be strong and was blindly ignorant of people’s feelings when I should have been more sensitive.

If there was a mistake to make, I made it. But, it was how I learned. I still have things to learn, but after so many years in the movement, my peers have taught me a lot. I think one of the most important lessons I’ve learned is that risk taking, and screwing up, come with the territory.

One of my elders often said to me, “Some people live and learn; and some people just live... which will you be?” Of course, I wanted to be the person who would live and learn. But this learning thing is hard. I was going to have to deal with my mistakes, errors, misjudgements, stubbornness, arrogance and my own insecurities.

Now, inexperience doesn’t mean that you cannot be a good advocate any more than 30 years in the movement means you will do things flawlessly. Each situation calls for certain skills we may or may not possess. It is a continual struggle to balance what we know with the situation at hand. That is a difficult task if you're going it alone. However, if you get involved in grassroots organizing the going is easier and one can learn a whole lot more.

As a young advocate, I had to overcome my fear, face the fact that I was going to say or do something that wasn’t right. Luckily, I was part of a group of supportive peole who worked together. Rather than making me feel foolish, or kick me out, they explained what I had yet to learn; they guided me, suggested alternatives, encouraged me to try again and celebrated each one of my learning milestones.

When I began advocating for my daughter I thought every issue I had with the school district meant a take-no-prisoners war. IEP meetings were more like hand-to-hand, full bayonette attacks on “those people”. After a while I learned how to control my behavior; how to negotiate and when to pull out the bayonettes. A few years after that, I never needed to pull out the bayonette; they knew I was a parent that would do what was necessary to assure my daughter received what the federal law promised. They conceeded to my “requests” for services.

You can learn a lot by just hanging around for 30 years. You can learn even more if you stick your neck out and try to make a difference. Don’t expect perfection. Don’t be intimidated by a fear of making a mistake. Do be self reflective and willing to accept a job not-too-well-done, and learn from it. President Obama in his first few weeks in office admitted to making several mistakes. Personally, I found it refreshing that he was willing to be self-critical and honest; then move on, a little smarter. I like a person who can admit they are not infallable; i trust him more now than before.

When I was doing parent advocacy training, I would encourage parents to try one new thing at a school meeting; to shake everyone’s hand and look them in the eye when they entered the room; to write notes about what theysaw their child doing at home and share it at the meeting; to know their bottom line and not settle for less, etc. Why? Because it helps equalize the roles between “just the parent” and the professionals.

That’s is why grassroots activists can flourish in a group. There is a synergy combining everyone’s experiences. Young people have energy and enthusiasm on their side that can overcome older person’s exhaustion. An older person can guide an unbridled person’s anger. All of us are smarter and more effective than one of us.

It is not what we do,
but also what we do not do,
for which we are accountable. - Moliere

The "Other" Other Unemployment Rate

2009-02-07T09:40:00.010-06:00

Ok, I am officially pissed; royally, utterly and angrily pissed off.

Today, (February 6, 2009) the Wall Street Journal featured an article titled, "The Other Unemployment Rate". In part, it stated:

The Labor Department’s official unemployment rate hit 7.6% in January, and its jump from 4.9% a year earlier marks the largest annual increase in the unemployment rate since 1975.But the government’s broader measure of unemployment hit a more stunning level: 13.9%, up from 13.5% in December.

The figure, which largely accounts for people who have stopped looking for work or can’t find full-time jobs, is the highest since the Labor Department started the data series in 1994. It’s just shy of a discontinued and even broader measure that hit 15% in late 1982, when the official unemployment rate was 10.8%

All these stories of doom and gloom about the unemployment rate hitting 7, 10, maybe even 15%. Oh, we are definitely heading in that direction. We may even hit the 20% unemployment rates of the Great Depression.

It's a national crisis. It consumes the front pages of every newspaper. Television and radio analysts cannot let 10 minutes pass without mentioning it. Throw your hands in the air and start screaming, "The sky is falling... the sky is falling; and it is.

Yet for decades the unemployment rate for working aged adults who want to work has remained fairly and dismally steady since the passage of the Americans with Disabilities Act.

A 2004 survey found that only 35% of working-age persons with disabilities are in fact employed compared to an employment rate of 78% in the rest of the population. Two-thirds of unemployed respondents with disabilities said they would like to work but could not find jobs. www.un.org/disabilities/default.asp?id=18

For graduates of four-year colleges, the employment rate, for both men and women, is 89.9%. For college graduates with disabilities, the employment rate is 50.6%. www.accessiblesociety.org/topics/economics-employment/labor2001.htm

Where are the front page stories about these stats of the other, other unemployed? Where are the pundits and analysts screaming about this national outrage? Of course there are none. They are silent.

So yes, I am more than a little pissed off that my society views me and my kind as worthless. So worthless, in fact, we don't even get counted in the climbing unemployment rates. We don't even get factored into the people who have stopped looking for jobs. We are invisible.

How can any federal stimulus package designed to stir the economy ignore people with disabilities in its plan.

Well, there was a little money initially; not enough, but some. Now the stimulus bill passed by the House that contained $13 billion for IDEA, $500 million for Vocational Rehabilitation, and $110 million for Independent Living are in jeopardy. Senators are now considering The Economic Stimulus bill; and all of the above provisions are prime targets for cutting!

Call to Action:

The American Association of People with Disabilities wants you to take this IMMEDIATE ACTION.

Call 202-224-3121 and ask for your Senators' offices and leave the message below:

"I urge you to keep funding for Vocational Rehabilitation, Independent Living and IDEA in the Economic Stimulus bill. People with disabilities deserve the opportunity to benefit from the economic stimulus package. With EVERY STATE facing looming budget deficits, the funding for these programs in the Economic Stimulus bill will offset any state budget cuts that would hurt people with disabilities and also ensure that people with disabilities are not left behind."

If you're not pissed... you're not paying attention!

It's not enough. Even what they have proposed is not enough. I want more.

I want any contractor with a federal or state contract to have a certain percentage of their workforce be someone with a disability. Affirmative action? Damn straight!
I want universal single payer national healthcare, so people with disabilities don't have to worry about losing their healthcare if they get a job, and employers won't be burdened by the cost of healthcare and will be able to employ more people... more people more stimulus.
I want equal pay for equal work.
I want a career ladder program for people with disabilities, so they can be considered for promotions.
I want those archaic statutes in the Fair Labor Standards Act that allow companies pay people with disabilities less wages for the same work amended or made illegal.
I want the ADA amended so that the public accommodation portion of the law actually fines violators who are inaccessible, rather than having to file a lawsuit against the business/agency. Like speeding, don't comply, get a ticket.
I want every freaking state run institution in the country shut down and the money used to "care" for that person follow the individual into a community based setting. Just think of all the housing starts that would stimulate.
Oh, I could go on, but I think I just popped my migraine cork and I must stop.

I thought if I wrote this all this down I could "talk myself down," like Rachael Maddow; it didn't help. I'm still pissed, maybe even more so. (She writes while reaching for her Zomig and Xanax.)

I Google

2009-02-03T16:54:00.004-06:00

Sometimes when my brain is too fried to think, or nothing is on TV, I Google. I usually put in the words "disability OR disabilities" and click the News search engine. Sometimes I add a modifier: murder, child, mother, protest, etc. Recently, I found this article in the Salt Lake Tribune by Linda Smith.

I read it; I read it again and I still don't know what to think of it. What do you think of it?

Certain legislators had planned to sponsor legislation to "ban abortion in Utah, period, end of story." Now they are focusing on legislation to create a legal defense fund for a future court battle. They should redirect these efforts.

Most women consider abortion because they worry about the life they can give the child. We could deter abortions by addressing these fears.

Consider the couple who finds that their baby will be born with Down syndrome, the most common genetic anomaly. Most (more than 80 percent nationally) choose to terminate that pregnancy rather than raise a child with intellectual disabilities. What can we do to dissuade this choice?

Today I can advise: "Don't worry, your child will get an education -- but in the worst-funded school system in the country. As an adult, he will be automatically eligible for Supplemental Security Income. This will allow him to live at the poverty level. He'll also be eligible for Medicaid.

"Down syndrome often includes dental abnormalities and vision impairments. Today in Utah we don't offer full dental benefits on Medicaid. Instead of filling cavities or doing root canals, we pull teeth. I guess we figure the disabled won't notice if they can't chew. And they look different anyway.

"We don't provide vision services, either, which can make it difficult to read -- maybe we figure they don't read anyway. Our Medicaid funding is the second lowest in the nation."

The couple might inquire: "Isn't it possible he could have a better quality of life? I've heard some children with Down syndrome hold down jobs and live independently."

I could report: "Yes! An education and a job - are possible. My 23-year-old son took courses at Salt Lake Community College and got an associate credential in child development. He has a job as a preschool aide, which he loves. But if a person with a disability needs more help, say regular job coaching, there is a waiting list of thousands of people for those services.

"This waiting list also limits help to live in the community. Usually adults get housing services only after their parents die and they would otherwise be homeless."

Wouldn't it be better if I could say: "In Utah we put the interests of the neediest first. Even in tough financial times, we don't eliminate important medical, educational and social services for people with disabilities who truly cannot fend for themselves without our help."

Of course, a woman may also consider abortion when her own financial circumstances are insecure. What will we say to her? Two years, maximum, of cash assistance if she is poor and without an income. Maybe subsidized child care … maybe not. No state-supported preschool. And, again, the worst-funded public education system in the nation.

Wouldn't it be better if we could say: "In Utah we invest in the future by putting our children first. We don't just give lip service to family values -- we put our money where our mouth is."

The rest of the nation permits this temporary assistance for up to five years instead of two, and economist Robert Reich recommends that this be extended during the current financial crisis. Wouldn't it be reassuring if Utah lawmakers also wanted to put poor children first?

In these fiscally insecure times, the idea that we should impose across-the-board cuts on all programs raises serious concerns about our moral fiber. Instead, we should examine our priorities and not abandon the weakest. We should fund investments in the future. This is an opportunity to let the public know that Utah invests in the future for its children and cares for the neediest.

Linda Smith is a professor at the S.J. Quinney College of Law at the University of Utah, where she directs the clinical program and has taught poverty law. She has a 23-year-old son with Down syndrome and works with Special Olympics.

http://www.sltrib.com/opinion/ci_11593395?source

No Slug-Bug Justice

2009-01-25T18:03:00.002-06:00

I hate the game slug-bug. The rules are simple. Someone thumps you, hard; usually a family member friend or neighbor sharing a car ride with you. Why? It is because you failed to see a Volkswagen Bug before they did. The unwitting, unwilling individual attacked is hit on the arm, leg, shoulder, back, head; really, any body part is an eligible target for the attacker. The first indication that game is on is when the victim gets the twhack.

Simultaneously, the attacker shouts-- quickly-- as if the two sentences are one word, "SlugBugYellowNoHitBacks!) (or whatever the color of the bug happens to be). It is the "no hit backs" that renders the prey with few resources, but to sit there victimized.

I do not know one person who plays this game by giving me a gentle pat, which would make the game bearable. No, it is as if my attacker wields a blow coiled with decades of rejection and feelings of inadequacy. Seeing a VW bug is the spark that ignites powder keg of cathartic release into my very surprised body part.

Hate is actually too mild a term to describe my feelings about this game, obviously designed by some class bully. I abhor this loathsome, malevolent, repugnant venomous, hostile “game.”

There are still people think they can play this game with me. But not for long.

When attacked, I contemplate my choices. Over time, I concluded there are three choices to deal with a slug-bugger.

Strategy One
I could resign myself to being the occasional victim to the attacks. No one is actually trying to kill me, or anything close to it. I could choose to accept that will happen from time to time. Aside from an occasional bruise, it is a victimless crime. However, I could not and cannot choose this strategy. Did I mention I loathe the game? I am a woman dedicated to its destruction. Gandhi-esque, I am not.

Strategy Two
Play the game. Keep an eagle eye out for the next VW bug and deliver the punch and punchline with simultaneous aplomb. This strategy has definite drawbacks for me.

When I am in a car, I want to read or enjoy the scenery. On the other hand, I may want to be alone with my thoughts; or enjoy the company of my companions. I do not want to have the minivan equivalent of the Israeli-Palestinian conflict within its confines. Besides, I previously I mentioned I abhor this useless pastime?

Strategy Three
This is the one I have chosen to use to bring about the destruction of this vile amusement. Unilaterally change the rules. Someone made these stupid rules; someone else can change them. I am that someone.

Now when the surprise attack happens to me, I turn to my attacker and hit them anywhere between 8-10 times and say, "I don't play fair." I have found that this has worked fairly well on all I know. It has been decades since anyone subjected me to it. My children, my husband, not even my parents, have tried to pull this car sport with me. They know that my reaction is out-of-bounds and not worth the fight.

I was wondering about using this strategy as a disability rights fight tactic. I am just not sure I am smart enough to know exactly how to change the rules to our favor.

What does it mean not to fight fairly against the threat of institutionalization, or unemployment, or access, or equality? What can we do to make the conditions so uncomfortable, so unbearable for the bullies that they lose their will to play and resign themselves to take the ride under the conditions we set forth?

Take the affordable accessible housing issue, for example. Not enough accessible housing? Slug-bug-thwap-no-hit-backs. Get on a waiting list. We can’t win with their rules.

We have to change them; take our blankets, urinals, and toothbrushes to that new housing authority office and use their lobby as a home. When that group gets cleared out, the next move in, then the next.

A few leaders, no matter how good, cannot negotiate for all the changes we need. This takes building a movement. We are all in it together.

Frederick Douglass said, “Power concedes nothing without a fight, it never has and never will.” Fight and the slug-bug rules will change.

Lift Every Voice

2009-01-24T10:21:00.004-06:00

I was hoping to hear it all through the inauguration; even just a hint of it. And, I was nearly disappointed that I would not; but then Reverend James Lowrey, civil rights hero, gentle man, man of peace and power began his benediction prayer…

God of our weary years, God of our silent tears, thou who has brought us thus far along the way, thou who has by thy might led us into the light, keep us forever in the path, we pray, lest our feet stray from the places, our God, where we met thee, lest our hearts, drunk with the wine of the world, we forget thee. Shadowed beneath thy hand may we forever stand -- true to thee, O God, and true to our native land.

The poem above is the last stanza of "Lift Every Voice and Sing", also known as the black national anthem. I thought it should be part of Barack Obama’s Inauguration Ceremony. It is a necessary part of the program. It marked a new level in the struggle of people of color.

Many whites will be surprised to learn there is such a thing as a Black National Anthem. Some would even argue it is unpatriotic to have it. However, the nation of people of color who live within our borders, but apart from the liberties and freedoms that whites enjoy, need words that bind them together as a nation. As long as they were not, and are not equal citizens, within the borders of the United States, I say keep on singin’ my darker brothers and sisters.

Yes, I know I am an old white woman and Barack Obama wanted his election and inaugural to be all-inclusive. However, without the anthem, without acknowledging the black struggle for freedom, and James Weldon Johnson poem, it would have been lacking.

As a disability rights activist I look to the civil rights movement of the 50’s and 60’s for inspiration, guidance, ideas, ideals, themes -- community. Our fight mirrors theirs. We can learn and we can honor them. Their struggle, in many ways, makes our own easier. People understand now the concepts of liberty, justice, independence, and equality. We “just” need to do the work of claiming them for ourselves.

Out from the gloomy past,
Till now we stand at last
Where the white gleam of our bright star is cast.

It is not easy, but we have a path to freedom, laid down for us by others who traveled this road before. Read/listen to the words, they speak of our trials too.

We owe them their due respect. Honoring them by knowing "Lift Every Voice and Sing" is one way. We can glean power from those words. Who knows, one day we may an anthem of our own.

Lift ev'ry voice and sing,
Till earth and heaven ring.
Ring with the harmonies of Liberty;
Let our rejoicing rise,
High as the list'ning skies,
Let it resound loud as the rolling sea.
Sing a song full of the faith that the dark past has taught us,
Sing a song full of the hope that the present has brought us;
Facing the rising sun of our new day begun,
Let us march on till victory is won.

Stony the road we trod,
Bitter the chast'ning rod,
Felt in the days when hope unborn had died;
Yet with a steady beat,
Have not our weary feet,
Come to the place for which our fathers sighed?
We have come over a way that with tears has been watered,
We have come, treading our path through the blood of the slaughtered,
Out from the gloomy past,
Till now we stand at last
Where the white gleam of our bright star is cast.

God of our weary years,
God of our silent tears,
Thou who has brought us thus far on the way;
Thou who has by Thy might,
Led us into the light,
Keep us forever in the path, we pray.
Lest our feet stray from the places, our God, where we met Thee,
Lest our hearts, drunk with the wine of the world, we forget Thee,
Shadowed beneath thy hand,
May we forever stand,
True to our God,
True to our native land.

Sputter Sputter

2009-01-22T19:24:00.002-06:00

It has become apparent that my new year’s ‘revolution’ to blog 30 times in 30 days, has become more like a new year’s rev... sputter... sputter and die.

Well, I tried. But, I refuse to see it as a failure. I took a risk, and learned that it was more adventurous than my life and commitments would allow. After bemoaning about this a freind wrote me recently:

All of us zone out sometimes; we can’t do/be the kick-ass activists we usually are at this moment. We don’t stop our activism cuz of this temporary snaffoo. Let’s stop this guilt-tripping and realize sisters and brothers will pick up our slack as we do gladly for them. It’s one more step in building viable community.

It is what I love about being part of the community of people with disabilities. I don’t have to explain, or justify, convince my brothers and sisters with disabilities. They care as much about me and I do them.

I have fibromyalgia pain and chronic fatigue. It is one of those disabilities that the world sometimes calls a cover up for laziness, a lack of motivation or that it is just make believe. People with invisible disabilities will know what I mean when I say that you know for sure when people think that about you. You can see it in their eyes.

But, I have grown accustomed to their looks and can overlook them. Mostly because I belong to the most accepting, most understanding and least judgemental minority community in this land. I have never run into a person with a disabilty who is racist or homophobic; there are a few but not many.

Even though I only revved, I feel very successful.

Church at the Bottom of the Hill

2009-01-19T13:46:00.007-06:00

Today is Dr. Martin Luther’s King’s Day. Every year, on this day, I am transported to a trip we took about a decade ago through the deep south. We took the route between Selma and Montgomery. It is an awesome trip. You can feel the marchers as you drive down the road. One of the sights we wanted to see was the Dexter Avenue Baptist Church.

It was the church where Dr. King was the pastor from 1954-1960 and selected to lead the civil rights movement. It was in Montgomery he led and won the bus boycott, one of the first blows to Jim Crow laws.

However, for me the church and the voting rights march are inseparable. It’s physical position to the tyrannical, discriminatory state government to the church cannot be overstated. The picture below shows an overhead view of the little church in relationship to the state government.

(click on the pictures for larger views)

How did the leadership of this church and those in Selma find the strength to confront the giant of oppression?
What you cannot see in the picture is that the capitol is on top of a hill. The church is at the foot of it. We stood at the bottom of the hill, in front of the church. The physical and metaphorical climb from one to the other was breathtaking.

Being at the place where history is made makes you appreciate how hard it is to speak truth to power. It takes all of us to do it. If we want change, we need to show up.
As a disability rights activist, I see that we still have a way to go to achieve such unity.

Post Racial America?

2009-01-18T18:53:00.001-06:00

30 Rock’s Tracy Morgan spoke when the show won a Golden Globe and I swear it was the funniest speeches of the night. He said:

"Tina Fey and I had an agreement that if Barack Obama won, I would speak for the show from now on. Welcome to post-racial America! I am the face of post-racial America. Deal with it Cate Blanchett! (Who is the whitest white person I have ever seen.) He also took at jab at the Emmys by saying, "A black man can't get no love at the Emmys. I love you Europe!"

It was a very funny moment by any standards. However, Barack Obama did not usher in a post-racial America. Certainly, Black, White, Latino, Asian, saw in him the leadership abilities sorely missed in our recent history. He created a broad coalition, and organized an internet campaign that fundraisers will study for decades. But, we have a long way to go to reach a post racial America.

White Skin Privilege
Having a Black president does not erase the deep ingrained systems of white skin privilege that oppress people of color in this country. Chip Smith’s book, The Cost of Privilege examines just how complex this history is and how wrapped up it is in both our patriarchal and capitalist class structure. It cannot be undone by the election of one man, even if it is to highest office in the country.

Peace and War
Paul Robeson said, “We must join with the tens of millions all over the world who see in peace our most sacred responsibility.” A post-racial society is one that is not at war or stereotypes muslims or any other group. Certainly, it does not hold people in prisons based on their religion or color, without charges.

Poverty
When we as a people allow a segment of our country to fall far below a living wage, we are no where close to being a post racial society. It is part inferior education, lack of equal opportunity, racial stereotyping; along with other factors that keep so many more people of color fall so far below that line.

Healthcare
In the Journal of the American Osteopathic Association published the article, Should healthcare reform be 'color-blind' by, B Ross-Lee, LE Kiss, and MA Weiser. It addressed the barriers to improving minority health. They concluded: that:

equality is instrumental to the improvement of the nation's health demographics; the persistence of economic, social, and political discrimination will continue to create barriers even if financial access is assured through a pluralistic approach to healthcare reform. Ultimately, they predict that any healthcare reform that does not address minority issues is doomed to fail if all three areas driving the national "crisis"--access, cost, and quality--do not encompass minority-specific healthcare strategies.

The idea and ideals of a post-racial America remains a dream. This angry white woman cannot accept the idea that race no longer matters in our lives. We have a long way to go.

Rip Van Big Noise

2009-01-17T12:55:00.000-06:00

This is the story of Rip Van Big Noise; with a question, not a moral at the end. It does not take place in the Catskills, but on the Midwest prairie. There are no games of ninepins. Instead, it was a game of medication fiddling. Mr. Van Winkle’s sleep lasted twenty years; mine, thank goodness, only lasted three days. Nevertheless, it does seem like I woke to a different world.

My doctor and I have a very good relationship. We work as a fairly well oiled machine. However, I have had a persistent issue where we have been unable to make significant progress—pain control.

I have fibromyalgia, chronic fatigue, and a small list of other maladies. It was our experimenting with pain control that caused me to lose half of this week.

Lyrica is the newest drug of choice for people with fibromyalgia. When I began having more pain, my Dr. suggested we try it. I was on it for about three months without much success; we doubled the dose. That caused my first bout of a week’s worth of semi-consciousness. I did not make the connection between the double dose and the increase of lethargy. It took a while, but my Dr. figured it out. Back on the original dosage, I woke up. Unfortunately, the pain returned. Honestly, I do not really know if it was really ever gone, it is hard to concentrate or assess when sleeping 24 hours a day.

Last week, he suggested we increase the dose by half, rather than double; that this in-between dose might give me relief and still function. No, I fell back into my semiconscious all-I-can-do-is-sleep mode. However, this time we knew why and I went back to the ineffective against pain dose.

My visit next week with him, we will most likely wean me off the Lyrica; which is fine with me. It would be nice to believe commercials. However, not all medications work for all people; and I guess I’m one of them when it comes to Lyrica. It is back to the drawing board for us.

If you consider a lifetime of days, three of them does not seem like a big deal. However, when I went to sleep, Bush was the still president, Blago-f-mouth was in the news daily, and Roland Burris was standing in the rain in DC. I woke up this morning to see President-Elect Obama’s train leave Philadelphia, Blagopottymouth seems to have disappeared, (when did he fire his attorney for the impeachment trial?) and Roland is now the Jr. Senator from Illinois. A lot can happen in three days!

What is the point of this blog? I do not want my two days of missed blogging to interfere with my 30 days, 30 blogs “New Year’s Revolution.” It would not be cheating, to extend it two days, would it? I was after all, sleeping off the effects of a powerful chemical agent. Rip van Winkle was a bit of a slacker; that’s not me (well not since college), is it?

Oh, Howe They Danced

2009-01-14T19:03:00.008-06:00

Yesterday, Michael and I wrote a blog about the decision to postpone the vote on closing Howe Developmental Center. The Joint Commission stated the reasons they had to put off the vote, is because they were ass-deep in impeachment proceedings against Governor Rod Blagojevich.

But today, comes is the important work of inaugurating the new legislature. According to Capitol Fax, “House Speaker Michael J. Madigan warned yesterday that the chamber's official inaugural proceedings would last longer than expected because of the necessities of re-impeaching the governor and reestablishing the House's impeachment committee. “

They will make fast work of that though. Madigan said that only one representative from each side of the aisle will speak on the re-impeachment debate today, so the House swearing-in parties may not be postponed all that much. Lord no, we wouldn’t want to get in the way of the parties!

Here is how legislators plan to fill their day today; a day when they could be doing the state’s business and addressing the closure of Illinois' version of Gitmo.

Inauguration Party List

1-3 pm: Inaugural Open House at the Capitol, State Treasurer Alex Giannoulias
2-? pm: Rep. Lou Lang's reception at Catie Girls, St. Nicholas Hotel
3-5 pm: Pasfield House, Honoring Christine Radogno, Senate Republican Leader
3-5 pm Naperville Area Republican Women’s Organization invite you to join them in honoring new representatives Michael Connelly and Darlene Senger: Presidential Suite at the Hilton, Springfield
3-6 pm: The Illinois Black Caucus reception at the Springfield Hilton Reception at the Grand Ballroom
3-6pm: Senate President-Elect John J. Cullerton reception at the President Abraham Lincoln Hotel, Grand Ballroom
4-6pm: Emil Jones III Inauguration Reception at the Sangamo Club
4-7pm: Reps. Raymond Poe and Rich Brauer will host a party at the Firefighters/Postal Lake Club
4-7 pm and12am-2 am: The 1^st bipartisan swearing-in reception at the Globe
5-7 pm: House Republican Leader Tom Cross invites you to welcome the newest members of the House Republican Caucus: John Cavaletto, Michael Connelly, Kay Hatcher and Darlene Senger at the Hilton Springfield
6- 9pm: Senator-Elect Dan Duffy reception at the Crowne Plaza, Winter Garden Room
7-?pm: the Latino Caucus will hold its reception also at the Crowne Plaza

Do you think one of the revelers will think of the people at Howe who have been beaten, abused, ignored, or neglected to death while they swill wine and eat well-prepared gourmet food presented in pleasing arrangements on silver platters? Probably not.

But I will remember them. Join me, won’t you? Let's change this. Call your Illinois legislator tomorrow and ask how he/she can justify the festivities, while prisoners at Howe Developmental Center’s very lives are threatened every day that Howe is open.

Also, get involved. Contact the Campaign for Real Choice, Chicago ADAPT, or your local center for independent living's Community Reintegration Program.

Let them feel the power of the Disability Vote!

Howe Could They...

2009-01-13T19:59:00.007-06:00

Updated 1-14-09

by Big Noise and Magitator

There is a perverse pride, being from Illinois. We take a chest thumping pride at our corrupt politics and gangster past. Our daughter, who lived in Chicago for several years, is now in Boston. When the Blago scandal broke, she and someone from Rhode Island were talking about it. The woman from RI was saying how corrupt their government was. Our daughter, with great bravado replied, “There was more corruption on my block in Chicago, than in the whole state of Rhode Island.”

(OK,-she-is-Mike’s-daughter,-but-we-don’t-like-to-make-those-kind-of-distinctions-in-our-home,-so-I-called-her-my-daughter-too-but-I-don’t-want-to-be-presumptuous-or-make-her-mom-feel-bad-but-I-digress…)

Seriously, watch the Illinois pundits that provide commentary on national television. They smile while they pundit. Folks talk to one another about it on the street, smile and shrug. Illinois, the birthplace of “the smoke-filled room”; the “vote early and often” cliché; the patronage of the Dailey machine; the gangster owned city tow lots; and more. What more can we expect here?

I cannot deny I was a part of that Illinois “our politicians and more corrupt than your politicians” fun group. However, it all changed yesterday. I attended a committee hearing about the closure of Howe Developmental Center. We wanted to show our support for closure by showing up at the budget allocation commission meeting. No money means it would have to close.

(Champaign for Real Choice Photo)

Howe is a hellhole of a residential facility. The federal government decertified it a year ago. Equip for Equality (our protection and advocacy agency) has investigated the facility seven times documenting describing in gruesome detail the deaths of 21 people and multiple instances of abysmal care. Two more people died there in the last two months. The United States Department of Justice is investigating violations of the Constitutional rights of the people living there.

The committee meeting was to start at 3:00. It started at 5:30 (it is after all, Illinois). When they finally met, their first order of business was to “quarantine” any action on the closure until sixty days after the senate impeachment trial verdict. Thus, they knocked the train to close Howe right off the track.

Have these folks every heard of multi-tasking? Can they only handle one thing at a time? People are dying for Christ’s sake!! Our most vulnerable people need action, their very lives are at stake; and this joint committee just put down the ball and walked off the court.

One legislator, Elaine Nekritz, Democrat from Des Plaines spoke for the closure of Howe. She noted Illinois dead last in offering community options to people with disabilities. She also pointed out we are under federal mandate to shut down these institutions. She was outvoted 10 to 1.

AFSCME, and other supporters of keeping Howe open want to use the additional time to pressure the politicians.

We have to use that same time to speak the truth to the legislators. As advocates for people with disabilities, we will use our voices for the most vulnerable. They should not disregard us. We have numbers: as we continue to organize ourselves, our strength will make them feel the power of the disability rights movement.

Crossposted at Matigator

Here is excellent information on specifics on why Howe should be closed NOW.

Good Grief

2009-01-12T19:45:00.005-06:00

I am not sure why this post is centered. I cannot seem to get it aligned left. I'm just too tired to try to figure it out now. Maybe later.

In the comic strip Peanuts, the characters always say “Good Grief.” I never really understood the term “Good Grief.” Grieving makes us feel just crappy. Our eyes leak, our stomach hurts, and it is hard to concentrate on anything other than the grief.

I have had a lot of time to think about grief over the last two weeks. I dissected three kinds of grief that people with disabilities in particular have to deal with.

Pain in the Ass Grief

This is not “real” grief but makes one say “good grief”; but there is nothing good about it. It includes:

Zealots who want to pray over us and tell us that God will cure us, if we would practice their religion.

An inaccessible world

People who put their hands on your body or property.

A zillion other slings and arrows that come our way during our days on earth.

Coming to Terms with Disability Grief

It some time in life, a person with a disability has to come to terms with their specific disability. The people I know best, my husband, daughter and myself, have all gone through this kind of grief. However, I think this is, “good grief.” It helps us come to terms with our disabilities and accept them as a part of who we are; not an all-consuming aspect of our life. The process of grieving what ever we think we have lost, or never had, leads us to acceptance.

We can then acknowledge our own and other people’s oppression. This gives us the insight that we must fight for a decent standard of living – jobs, a love life, privacy, inclusion, housing, and all those other things worth organizing and fighting for.

Losing Friends and Activists Earlier Grief

We lose our friends with disabilities far to early in their lives than people without disabilities. People without disabilities live an average of 77.6 years. The average life expectancy of a person with a spinal cord injury is much lower.

People with Down syndrome live an average of 55.8 years,

While reasearching this issue I found that even people with learning disabilities tend to die earlier. I found the table below that shows the disparity.

*Area of disparity*	*Example in learning disability*
Increased mortality	Lower life expectancy
Increased morbidity	High levels of epilepsy, sensory impairment and behavioral disorder
Increase in negative	High levels of obesity and underweight; low employment; fewer social determinants of health connections and meaningful relationships
Access to services	Low rates of uptake of health promotion
Quality of services	High prescription rate of antipsychotic medication with no evidence of psychosis; high rates of unrecognized disease identified on health screening

I am shocked by these findings. It demonstrates how culture devalues our lives. Even people with invisible disabilities die earlier. The fact that most people with disabilities live close to the poverty line certainly does not help our access to adequate health care.

All this thought about grief comes because I learned that I a third friend/activist died in the last 12 days. Her name is Carol Kemp (nee: Danner) I’m selfishly lost in my grief for my friends. It is oppressive, and overwhelming.

When I vowed to write every day this month, I had no idea I would be writing about the death of three friends. I am grieving. The writing is not helping the grief, but at least I have a place to store it, to share it, and slowly come to terms with it. Nothing about this grief feels good.

Eulogy: The World's Best Personal Assistant

2009-01-11T12:51:00.007-06:00

People do not die for us immediately, but remain bathed in a sort of aura of life which bears no relation to true immortality but through which they continue to occupy our thoughts in the same way as when they were alive. It is as though they were traveling abroad. Marcel Proust~

Darrow Hozian (pictured on the right) is living in that “sort of aura of live” for me right now. I cannot believe he is gone. I have said goodbye to two dear friends and activists this week. JoAnn Bayer died last week. Darrow died on Friday, January 9, 2009.

He was THE BEST personal assistant on earth; and has the awards to prove it. He also has a long line of people with disabilities he worked for as a personal assistant, who will attest to his best-ness. I know he did not receive pay for much of the work he did; he did it out of kindness and love. If your PA did not show up, Darrow was the first person you would call to for emergency help. He rarely, if ever, turned people down.

The fact he was a person with a disability too may have something to do with it. He got it.

Darrow had cerebral palsy. His gait was a little spastic, and his speech a little slurred. He was strong… really strong. He could lift his own weight; picking up a person and transferring them from their wheelchair to where ever, effortlessly. He was not a big man, 5’8” maybe; but he had the largest hands for a man his size I have ever seen. He could have easily palmed a basketball. Making the basket may have been another story.

Darrow’s heart of gold is what that made him such a valued member of our community. He would do anything for anyone.

He was not without his demons. Sometimes we people with disabilities live on the edge and get used to taking risks, sometimes dangerous ones; sometimes destructive ones.

That is the point of living independently; we get to make those choices just like the rest of the world. Darrow made his; and those choices probably shortened his life. However it was, after all, his life. We sometimes forget that independent living is all about freedom. Still I wish his demons had not followed him so closely.

Darrow had a twinkle in his eye; what did he know I didn’t know? Did he have an unshared secret that made his entire face light up when he smiled like that? He also carried with him an arsenal of jokes. He was quick witted and fun and funny. He had an earnestness not often seen in humans. He never failed to ask about Mike’s health when I saw him, and he asked about me, every time he saw Mike.

He had a strong desire to contribute any way he could. To mention another, for years he and Janice did all the mass mailings for the Coalition of Citizens with Disabilities in Illinois… no small feat.

His last few years were difficult ones for him. However, whenever we saw him he always approached Mike and gave him one of those “man hugs.” You know, where you shake hands with one hand, and throw the other over the shoulder, then pull the person tight to you.

His long time partner, Janice, is in southern Illinois now burying him. We, in Springfield, feel alone mourning our loss.

Darrow and Janice dancing at the 2008 Coalition of Citizens with Disabilities in Illinois/Independent Living Annual Conference.

Mike (Magitator) also blogged about Darrow today. You can read it here.

Eastward Ho

2009-01-10T15:24:00.006-06:00

Today, the Navy commissioned the USS George H.W. Bush aircraft carrier. However, our family dedicates this day to my father-in-law, Harry Meiselman, who served aboard the San Jacinto with the former president.
___________________
Updated 01-11-08 (After Dad read it and corrected my poor memory)

You know how some family stories become legendary in your own history. It has an air of unbelievability; yet, with all your might, you want to believe it is true. This is one of those stories.

My dad was born in Ringo Kansas in 1921, the youngest of eight. Do not get the atlas out. It is not on the map; in fact, it no longer exists. It is one of those boom-bust towns that and came and went with the coalmines all across this country. The company named the town Ringo after the people who owned the land on which they dug the shaft, not for a famous British drummer. It was in the extreme southeastern corner of Kansas where it meets Oklahoma and Missouri.

The nationwide coal strike of 1922 forced my family to move back east. Here is what www.workerseducation.org says about it:

On the eve of the expected big strike of the spring of 1922 the members are exhorting one another to hold together, but the big union is cracking in many places in spite of them. District 14, Kansas, is in open rebellion against headquarters. District 12, Illinois, the largest district, is supporting the rebellious Kansas miners. District 10, Washington, is kept in line with relief remittances. The leader of the Kansas rebellion, Howat, received 132,416 votes at the last election of officers as against 175,064 for the one elected. District 14 was expelled by the machine in office…

So, the United Mine Workers blacklisted Grandpa and his fellow miners. Many of them headed toward Virden Illinois, where they had support. Ok, that is the factual backstory. Here is where “The Legend” begins…

Grandpa found work in a Virden Mine, (Panther Creek), and went ahead. Now the rest of the family had to get there. No easy task; eight children and their mother, little money and their meager worldly possessions. Grandma made sandwiches for the trip… no stopping at restaurants for these poor people.

My grandmother and my father, baby Leon, took the train. The family believed the trip would be too hard on a baby. Once safely on the train, the my aunts and uncles (some as young as 3) packed themselves and everything they owned into an old Model T Ford my grandpa owned.

Now you can look at your atlas. The trip between southeastern Kansas and central Illinois requires a drive through the Ozark Mountains in Missouri. Of course, in 1922, there were no paved roads in rural areas, especially in remote areas. The trip was difficult. They often found themselves in ruts. When that happened, the entire crew had to get out of the car, push and sometimes lift the car out of its jam. The Model T had no working headlights. So at night, they stopped along the side of the road and slept on the ground and in the car.

Besides that, those old model cars had gravity-flow carburetors. Every time they came to a rise, they had to turn the car 180 degrees, put it in reverse and back up the hill/mountain, or else the car would sputter to a stop. Imagine backing up every hill through a mountain range.

It took five days, driving from sun up to sun down to get to Virden, about 400 miles; and here is the kicker to “The Legend”. I believe my aunts, uncles, and grandfather had one of the best times of their life on that trip.

I have heard the story at least 100 times, probably more.

Recently, my cousin Geno, my oldest cousin and the son of the driver of the roller-coaster trip (my Uncle John) that drove them to Virden, sent me this picture.

I could not, and still cannot, believe it. I am now the proud owner of a picture of “The Legend.” It really happened and here is my picture to prove it.

Guest Blog

2009-01-09T15:59:00.000-06:00

GUEST BLOG-by Magitator

My partner made a New Year’s “revolution” that she would blog every day for a month. She is making good on her vow. However, there are some drawbacks to her fulfilling her pledge.

First, a couple of disclaimers. She is an excellent blogger. She has important things to say and she is a talented communicator. I enjoy reading her columns!

Yet, I am begging you the public for some aid and assistance.

I told her that an executive director of a non profit advocacy organization asked me to ask her to take a day or two off because his staff was too busy reading and copying her writings that clients were not being served. “Aw…isn’t that touching…” and it is. To think that my partners’ writing is shutting down entire offices sure is flattering. So instead of having the desired affect of slowing her down, she now wants to increase her output so she can have the same affect on other offices. Perhaps, she thinks, if she writes enough, the entire non-profit industry will grind to a halt, bringing about the IWW dream of the general strike!

Well good for the proletariat and other oppressed and exploited. Where does all this agitation and propaganda leave me? Well I’ll tell you! I watched the entire University of Florida – Oklahoma University football game without calling me to join her in bed. A first since we started living together 90 some odd years ago.

Please people—stop reading her blogs! She wont be missed for 1 evening will she? Besides you will be doing me a lot of good!

New Jersey Proposal to Close Five of Seven Institutions

2009-01-08T15:22:00.024-06:00

(Updated 8:03 PM)
A New Jersey Assemblyman and Budget Chairman, Louis Greenwald, a democrat from Camden (pictured on right), is proposing to close FIVE of the seven state institutions for people with developmental disabilities. Can the other two be far behind? I hope not. His proposal calls for them to be closed within five years, which seems longer than it should take, but at least it's a plan. The money now spent on them would be used for community housing. Hallelujah!

According to a posting by the New Jersey Star-Ledger's reporter, Susan K. Livio, Greenwald says there are compelling moral and economic reasons to "radically restructure" the way the state spends money on people with developmental disabilities. This is one of those cases when throwing money at the problem makes it worse. Big bucks mean maintaining prisons for people with disabilities.

It's becoming clearer around the country that incarceration is not cost effective. Even the prison system is moving to house prisoners in their own homes. The Natchez Democrat newspaper did a cost comparison between incarceration and in-home house arrest. Originally designed to reduce prison overcrowding, officers say the program has another important benefit: It is cheaper than other forms of incarceration. They found that the cost to house a prisoner in a county jail is approximately $22.21 per day; in a work center, $33.69; in a restitution center, $23.53; and in the Home Supervision Program, $6.46 per day.

Greenwald said the state can no longer afford to support seven institutions, where it costs about $227,000 to house EACH of their 2,900 residents. He estimated community care would cost less than half of that amount. That is $658,300,300 annually.

"We are warehousing human life," Greenwald said January 27, 2008. "We pride ourselves on being a progressive state in health care and science." Other states have closed a total of 140 institutions, and New Jersey has not closed one in 10 years.

According to the article he is sure that the state's labor leaders, numbering about 8,000 at these institutions will oppose the measure. Don Klein, executive vice president for Local 1040 Communications Workers of America, said the bill appears to be a stunt to save money. Klein's position is a short-sited and regressive. Each individual will leaving an institution will still need in-home services. There's no reason those workers laid-off at the institutions could not transfer to being in-home workers and should not have union representation. (See Shiva and my comments below, for a clarification of this paragraph.)

He also anticipates that some parents and family members how have relatives in these institutions will who prefer the around-the clock care provided by the developmental centers. Being a parent, I understand the concerns they face; however, the concerns of the parents should not interfere with the independence of their adult children.

New Jersey's State Human Services officials say there are roughly 2,400 people living at institutions who are willing and able to move to community housing. Under the bill, two centers -- one in north Jersey, the other in south Jersey -- would remain open to accommodate the people who want to stay. If it were you... which would you prefer? If available community options were available, those two remaining facilities will also be empty.

Joseph Young is the executive director for Disability Rights New Jersey. The agency sued the state on behalf of people who want to leave institutions and 8,000 others living with families who are on a waiting list for state-funded housing, called the bill "an incredibly ambitious program. Whether they can logistically do it I have no idea, but clearly they are headed in the right direction," Young said.

C'mon Mr. Young! way to stick your neck out. People are languishing in hell holes. Let's be "incredibly ambitious."

One can only hope the forces for disability advocates will succeed in their efforts; also that other states (are you listening Illinois?) will follow their lead quickly.

If you want to become involved in creating more community choice options for people with disabilities in Illinois, contact the Campaign for Real Choice, Chicago ADAPT, or your local center for independent living's Community Reintegration Program. Other states have similar programs, but I am not familiar with them... do a little Google research to find them.

How Proud do You Feel?

2009-01-07T13:01:00.011-06:00

Pride is a feeling we all tend to wear like an ill-fitting suit. We can put it on, but it never quite feels comfortable.

Pride is after all, one of the Seven Deadly Sins. All our young lives we've been trained in our Judea/Christian up bringing, that pride comes before the fall; pride is at the bottom of all big mistakes; and, that pride makes us artificial. Is it any wonder we have difficulty wearing pride?

This morning for example, a co-worker said I looked, "pretty". I am just a few months short of my 60th birthday. My youthful attractiveness has faded; replaced by the strange unfamiliar face of an old lady. However, I had paid particular attention to dressing today. I have a presentation later and I want to look nice. So I fluffed my hair a bit, put on a new shirt and jacket, and slipped on my wine colored winged-tip orthopedic shoes instead of tennis shoes, my most used footwear.

My first reaction was to throw her "pretty" comment aside. (I'm not pretty!) As soon as I heard it, I wanted to squash it. But then, the other side of my brain spoke to her instead. I chirped, "Thank you! It was just the look I was going for." And immediately, I felt prettier. It was a prideful thought, but certainly not a bad thing to have happen to me.

I've been thinking about and working on this pride thing for a while; especially Disability Pride.

Laura Hershey's poem has been probably one of the most helpful guides to building my own disability pride. It is titled, Get Proud by Practicing and it hits the nail on the head.

In part of her poem, she writes...

You can add your voice
All night to the voices
Of a hundred and fifty others
In a circle
Around a jailhouse
Where your brothers and sisters are being held
For blocking buses with no lifts,
Or you can be one of the ones
Inside the jailhouse,
Knowing of the circle outside.
You can speak your love
To a friend
Without fear.
You can find someone who will listen to you
Without judging you or doubting you or being
Afraid of you
And let you hear yourself perhaps
For the very first time.
These are all ways
Of getting proud.
None of them
Are easy, but all of them
Are possible. You can do all of these things,
Or just one of them again and again.
You get proud
By practicing.

She is saying by just doing something you have never done before builds pride. Laura tells us to do it with others; togetherness eases the doing and makes you proud. She is also political in her focus of disability pride. We need to think of ourselves a worthy of pride, that we are pretty, and funny, and smart, and valued. And we must see that in others too. Doing that means you will never be alone...

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.

You get proud

By practicing.

Those seven deadly sins; for sure, some are evil. But pride, I believe got a really bad rap. Pride in religious traditions means: excessive belief in one's own abilities, that interferes with the individual's recognition of the grace of God. The early church used the sins to teach subservience to their church and their God. Pride is an intellectual tool. If you used your intelligence to challenge the church, you were harder to control.

However, Disability Pride honors all of God's creation, does it not. As oppressed people we must develop a sense of pride to succeed, to have any a quality of life equal to the non disabled, to be able to love ourselves, others, and their accomplishments. If we do not feel pride in ourselves, our value, our people, our movement, there is no grace; and there is no movement.

You can read Laura's entire poem here.

You can buy a copy of Pride against Prejudice at Amazon.com here