Monday, December 24, 2007

Butt-Crack “Angel”

Reading Penny Richard’s entry about Blue Christmas gatherings reminded me of a time when I needed help finding my joy.

Many years ago, my husband was on strike with his union for six-months. We signed up for food stamps and sold furniture to pay the mortgage. Thoughts of Christmas presents were out of the question. Even though we had a tiny 900 square foot house, figuring out how to pay the utility bills kept us awake at night. Because he worked so little, we had to self-pay our health insurance out of threadbare pockets. We had our first child. I had to have emergency surgery after our baby’s birth. I thought the worst had finally happened when our baby started having seizures.

Until then, my life was untested. I had a reasonably secure working class childhood. I had both my parents, a solid roof over my head, relative health, free public education, potable water, a neighborhood where I could stroll the streets at night, friends… In the grand scheme of things, this was small potatoes. Nevertheless, it was my biggest trial to date.

I felt overwhelmed. Then, things got a little worse…

Very unpleasant seepage began bubbling up from the bowels of the waste removal pipes. It oozed into our basement family room.

“Family room” is a generous description. It was a partially indoor-outdoor carpeted cinder block box, painted Harvest Gold, so popular in its day. We divided it into three small areas; my little stained glass studio, a combined laundry and guest bedroom (Oh, my poor guests.) and a music room. My husband’s saxophones, and other hand-held instruments were safe, but we just were not sure what would become of his precious B3 Hammond organ, amps and other electronic equipment standing in poo.

It happened on the gloomiest of gloomy days; no hint of the sun, just low hanging misty clouds. No green grasses, only brown. The trees reminded me of skeletons and the atmosphere matched my mood. As I sat near the window watching for the Rotor-Rooter guy, I started crying. It was an ugly cry; a runny-nosed, red-faced, woe-is-me, ugly motherfucker of a cry.

When he arrived, I pointed him to the basement, and resumed my cheerless teary perch at the window. Eventually, I heard him clanking things below me. My sense of decorum overcame my depressive fog and I ventured downstairs to offer him a drink and see what he was doing.

I plopped myself down on the last step and watched his backbreaking labor. Bending over a drain, he pushed a snake down, then up a little, then down more. He was a 40-50ish barrel-chested big-bellied fella with a kind face; though I had not seen his face since I let him in the house. No, I was staring straight at the butt-crack end of his body, bent over my sewer pipe.

I started the conversation. “So, what’s the problem?”

“Tree roots”, he grunted as he pushed the snake in deeper.

“Tree roots?” I said incredulously.

He pulled hard on the snake, ripping out the last of the blockage, “Yeah, roots” he said breathing heavily, as he braced himself against the wall.

“That’s just great,” I whined. “It’s the deadest time of the year. Nothing is growing and my tree roots decide to invade my sewer pipes. Great…just great…” my voice trailed off.

He straightened himself up, pulled off his gloves, and accepted my offering of iced tea. Yanking his pants up by the belt loops, he paused, then took a big drink. As he started packing up his tools he gave me what I thought, was my first horticulture lesson. It was so much more.

Now, I swear to you that every word you are about to read is absolutely true--without a hint of exaggeration. I wrote it all down after he left, so I would not forget it.

He said, “Now is when real growth happens. See, in the fall the sap runs down to the roots, and the leaves fall off the tree. It just looks dead in this inhospitable season. In fact, it has never been more alive. The sap is feeding the roots. They grow longer… deeper, making the tree more stable, strengthening it. In the spring the sap will run up the tree and new growth appears above ground. If the tree doesn’t grow at the roots in the winter, it dies.”

He looked straight into my puffy red eyes, smiled slightly, and said, “It’s like that for people too.” And with that, he finished packing his tools, handed me the glass, accepted my check, and was out the door.

Reflection

I went back to my chair and suddenly the gloomy day looked a little brighter. My funk was lifting. Was it true, I wondered? Was I in a “winter phase;” would spring come again? I wondered if it was also true that, I was growing, getting stronger, making my foundation more firm because of my life circumstances. I wasn’t sure then, but now I know that, of course, it made me a stronger person.

I am not one of those people who believe, “God will only give you as much as you can bear.” There are times and places where people are dealt way too much to bear. But most of the time we can use adversity, darkness, danger, even despair to become more fully human and to recognize that it happens to others too. It can strengthen our understanding and relationships with oppressed people; if we open ourselves to it. Struggles for justice and equality are born out of circumstances like this.

Nor do I think I “entertained angels unaware.” I think the great whomever and her angels are far to busy to worry about my sewer. However, I do believe my rotor-rooter man, with all his humanity, looked up from his drudgery and stepped outside himself, just for me. He saw a young inexperienced mother who, in the midst of her first real crisis, needed support and a different perspective on her hard times.

Now that was a Holiday Miracle.

Peace on Earth, Goodwill To You All.

Saturday, December 22, 2007

Too Late for Nataline

Nataline Sarkisyan was only 17. She had leukemia and recently received a bone marrow transplant from her brother. Complications from that transplant caused her liver to fail. She died December 21, 2007 at 6: PM. Our hearts break for the Sarkisyan family’s loss of their lovely daughter and sister.

CIGNA Insurance Company initially denied Nataline Sarkisyan’s liver transplant surgery. Their justification: “it was too experimental.”

The company finally agreed to pay for the surgery; eight days later after news of their initial decision became public; and just before Nataline died at the University of California, Los Angeles Medical Center.

Clearly, it was a public relations decision, not a health care decision; way too little, way too late and for all the wrong reasons.

Nataline’s death is another illustration of our morally corrupt for-profit health care system; and the lengths insurance companies will go to insure profitability.

What is Experimental?

According to Wikipedia, “Liver transplantation nowadays is a well accepted treatment option for end-stage liver disease and acute liver failure.”

It was 1967 when Dr. Thomas Starzl performed the first successful liver transplant in Denver. Liver transplantation remained experimental and patient’s survived at a rate of about 25% through the 1970s. Sir Roy Calne invented the first anti-rejection drug and patient survival rates dramatically improved. Specialists now perform liver transplantation surgeries at over one hundred centers in the US, as well as numerous other centers worldwide.

1989 saw the first transplant of a partial liver from a live donor. It is possible to donate a portion of a liver, because to some degree, it can regrow tissue.

In 2005, about 6,500 patients received liver transplants in the United States. More than 35,000 people on the planet have had successful liver transplant surgery. About 17,000 Americans are currently on a waiting list for a liver transplant

One-year patient survival is 85-90%, and outcomes continue to improve. Next to the kidney, the liver is the most commonly transplanted major organ.

This is not an experimental surgery.

What was Unusual?

In a letter reversing their initial decision, Deborah Garnsey, a registered nurse who reviews cases for CIGNA, said she had reviewed the family's appeal on Thursday and decided that day "to make an exception in this rare and unusual case."

On Thursday December 20th, friends, family and members of a nurses association held a protest outside CIGNA headquarters in Glendale, urging the insurance company to reconsider.

That is what is unusual about this case. It was the lengths the family and the California Nurse’s Association were willing to go, to bring this story to the public. Unfortunately, CIGNA still won. They delayed their decision long enough to ensure that Nataline would not survive. CIGNA will not have to pay for the surgery or for her after care now.

What would it cost?

According to the United Network for Organ Sharing, estimated charges for liver transplantation are around $314,600; annual follow-up charges run about $21,900 for the rest of the person's life.

In 2000, the Southern Medical Journal published a study titled, Liver Transplantation in the Era of Cost Constraints. Here is what the researchers found:

These tremendous expenditures have brought pressure on the health care industry to minimize cost of services and/or eliminate services. Managed care has been touted as a potential means of limiting the explosion of health care costs. Managed care corporations and third-party payers in turn are putting pressure on providers to limit costs. This has resulted in a shift of the financial risk from the payer to the provider and has put pressure on transplant programs… Studies have shown that transplantation in the sickest patients is not cost-effective… Thus, for transplant centers to become more economically efficient, they must… streamline costs and become more prudent in patient selection. [emphasis added]

Clearly, the decision about who gets a transplant no longer belongs to scientists, but to actuaries. Each year more than 27,000 Americans die of liver diseases.

People with disabilities face a difficult battle with physicians about the value of our lives. However, in this case, we had doctors and nurses fighting to keep Nataline alive, and bean counters signing her death certificate.

What Will Happen Now?

Attorney Mark Geragos told reporters at a Friday news conference that the girl's family will file a civil lawsuit against CIGNA. He is also asking a California district attorney to look into filing manslaughter or murder charges against the company. "CIGNA Health Corporation literally, maliciously killed her...they consciously disregarded her life," Geragos said of CIGNA. "And they did that for one specific reason: they did not want to pay for her after-care."

The California Nurses Association (CNA) publicized Nataline's case, calling it an illustration of the need to abandon private insurance coverage in favor of a single-payer plan.

"If CIGNA could approve the transplant yesterday in response to hundreds of phone calls and people pounding on their door in Glendale, why couldn't they have done it eight days earlier?" said a CNA spokesperson. "The transplant was recommended by the medical professionals at the bedside, they should have been listened to."

Did leukemia and liver disease kill young Nataline Sarkisyan? Or, did she die because CIGNA, a profitable company, was not profitable enough for its shareholders; so they made a callous decision to save some money.

That answer is obvious.

It will take Americans refusing to let an avaricious insurance industry make our health care choices. Fighting for single-payer/universal coverage is the first step.

Friday, December 21, 2007

I’m in Love

Forgive this indulgence. When I started writing Big Noise, I dedicated it to the battle for freedom, justice, and equality; but fighting is the furthest thing from my mind. I have fallen giddily, happily, deeply, and wildly in love.

I am now a grandmother to beautiful baby, Sabine. She was born on December 19, 2007 at 10:17 PM.

My daughter and her husband not only bestowed me the title of grandmother; but allowed me the privileged to present at the baby’s birth.

I know you will believe me, being the objective, analytic researcher that I am, that no more beautiful a child, ever graced this planet.

Mom, Dad, and the baby are all doing great! Mike and I? We are walking on air.

(Photo Description: A picture of me, looking very tired, but happy. I am holding baby Sabine, who is swaddled up in a blanket with only her head and one tiny little hand escaping. She has lots of dark curly hair... just like her grandma).

Tuesday, December 18, 2007

Will Joe be Home for Christmas?

I got a phone call at work. It's the kind that lingers long after you hang up the receiver.

Maria Forest and her husband, Joe, were looking forward to retirement; until their world turned upside down. First, the company where he worked for 33 years, went belly-up a year after he retired; he lost his pension. Two years later, he got a diagnosis of Amyotrophic Lateral Sclerosis (ALS).

No one expects that; they were understandably shocked and insecure. He stayed at home for a while; then landed in the hospital because it was difficult to breathe. Hospital staff, 50-60 miles from their home, decided he needed to convalesce in a nursing home, close to his wife. Maria, not knowing what to expect, agreed.

The man she left at the hospital was not the man she saw in the nursing home just 24 hours later. Joe, in one day, became despondent, weaker and his speech less intelligible. He begged to come home. Maria wanted to bring him home, but didn't know if she could care for him. Besides, she didn't have a respirator and didn't know how to get one.

Within a month Joe was back in the hospital. His central line port was infected and he developed a urinary tract infection. He begged his wife not to send him back to the nursing home. It was the only thing he wanted... to be home for Christmas and to die there.

Maria and Joe started looking for help. The hospice program said they would come in and help Maria care for him. All they needed was to get that respirator. The hospice program suggested she call their local center for independent living's reintegration program, a Medicaid waiver program set up to help people get out of nursing homes.

The person on the other end of the phone was all ready to help; until she found out he was 63. "I am sorry," she said, "this program only goes to age 60." She provided no more information about how Maria might get her husband home for Christmas.

Maria called the doctor who had been caring for Joe. She asked him for a prescription for a respirator, so Medicare would pay for it. The doctor told her, "Sorry, that's out of my territory." Out of his territory? What the hell does that mean? He made no recommendations about "in-territory" doctors.

I'm not sure how she got my work number; probably somewhere in the dance I call, "The Social Service Shuffle."

If you've ever tried to secure services, you have danced this dance. It's like square dancing, only in a straight line that goes absolutely nowhere.

You dance with one bureaucrat and then get passed to another, then another, then another... Each person is perfectly nice, dancing in step, until you hear "You don't fit our criteria." Now it's time to move on; as you leave a particular partner, you get another phone number to call.

Initially, Maria's thoughts were clear; but the system put her in a tailspin. By the time she called me, she didn't know how to tell her story or explain what she wanted. Most people have to tell their story from the beginning... especially those in crisis. They don't have the ability to synthesize and analyze what's happening to them.

As the story unfolded, I said, "You've been working really hard to make this happen, haven't you?" She had no words... she was crying on the other end of the line. Slowly, we deconstructed her story and returned to the need for a respirator prescription.

Remember Joe's , "it's not my territory" nursing home doctor? Maria is pretty sure he is part owner of the facility. Apparently, his "territory" covers what will line his pockets.

I told her there was a doctor at the hospital that was overseeing his respiratory care. I encouraged her to call the hospice and ask them to get the doctor to write the prescription. I gave her my name, spelling it all out, and phone number. I asked her to call me back if that didn't work. No more phone numbers. The shuffle stops here.

It is her question, that lingers with me still. "It's all he wants... to come home for Christmas and to die here. Why can't I make it happen?"

Saturday, December 8, 2007

Divided We Stand

When did:

We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic tranquility, provide for the common defense, promote the general welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.

become:
I, a person in the United States, in Order to form a more perfect Division, establish Prejudice, insure domestic paranoia, provide for world domination, promote the welfare of a few, and secure the Blessings of Liberty to the power elite and their posterity... do reject and pervert the Constitution of the United States of America.

I understand that when the founders wrote preamble of Constitution, lots of folks were left out. We the people, excluded slaves, women, people with disabilities, peasants, illiterates; really all but white property owners.

But there was, at the very least, the acknowledgment of a social contract between the people; a sense that they were in it together, that their futures were bound together. They thought in terms of "we".

"We've" lost that.

People with little, blame people with less. People with insurance feel absolutely no social contract with those who do not. Domestic tranquility is replaced with race-hatred, gender-biased legislation, ableist discrimination, wall-building and color-coded terrorism threats.
Liberty applies to still a select few. Common defense is now aggressive; offensive (in every sense of the word) attacks. Oil laying under another land, is ours by manifest destiny; as are the vast resources of the world, the diamond in Africa, the spices in Granada...

Repeating Itself
Historians Arnold J. Toynbee and James Burke believe the Roman Empire (a rotten system initially) didn't so much fall, but experienced steadily declining decay of their institutions. In their view, the Empire could never have lasted without radical reforms.


Their economy plummeted into "Raubwirtschaft", or to a plunder economy;
where the goal is to steal the wealth and resources of a another country or area. It also relied on booty and a tax system that drove small farmers into default or into debt to the elite who were exempt from taxation. Their slave labor prevented a middle class with purchasing power. They exported few entrepreneurial or technological goods.


All this was happening at the same time military costs and governmental pomp increased. "Financial needs continued to increase but the means of meeting them steadily eroded."
Sound familiar?

Toynbee & Burke propose that the powerful Roman Empire ended, long before its final dissolution.

Are We Our Brother's & Sister's Keeper?

How and when did this happen to us? Is it human nature or inherent in our system? Is the only way to survive through "radical reforms?" Will those reforms turn toward a new, more inclusive definition of "we?" Or, are we destined to follow the "I" path to our own demise?

We must stop pitting Christian against not as Christian and other religions; race against race;
able-bodied against disabled; heterosexuals against all other sexuals.

Do do otherwise, is to design our final destruction as a people.

Monday, December 3, 2007

The Willard Suitcases

Photograph of an attic filled with what looks like old bunk beds lining each side of the attic. There are suitcases piled on the When Willard Psychiatric Center in New York's Finger Lakes closed in 1995, workers discovered hundreds of suitcases in the attic of the abandoned building. Many of them appeared untouched since their owners packed them decades earlier before entering the institution.

The suitcases and their contents bear witness to the rich, complex lives their owners lived prior to being committed to Willard. They speak about aspirations, accomplishments, community connections, but also about loss and isolation...

The suitcases and the life stories of the people who owned them raise questions that are difficult to confront. Why were these people committed to this institution, and why did so many stay for so long? How were they treated? What was it like to spend years... shut away from society that wanted to distance itself from people it considered insane. Why did most of these suitcase owners outlive their days at Willard? What about friends and families? Are the circumstance today better than they were for psychiatric patients during the first half of the 20th century.


So opens the powerful Willard Suitcase Exhibit. It's not an easy place to visit. It has apparently been up for a while. My friend, Jane, directed me there this morning, I have been unable to think of little else today.

There was no getting out. Any life they knew before was over. From the day they entered Willard, their labor was exploited, their connection with the outside world severed, their very personhood stripped.

My heart is heavy having just left the site. It chronicles the lives of the owners of the suitcases. Peering into someone's suitcase is being a voyeur. I had invaded someone's personal space. I was violating their privacy.

Yet, these people, from the moment they packed those suitcases, lost any right to a private life, for the rest of their lives.

There are suitcases for:

  • Sister Marie Ursuline, #15468 lived at Willard for more than 30 years, after peripheral involvement in a church scandal and depression.
  • Mr. Lawrence, # 14956 who lived there more than 50 years after a head injury. He was the unpaid gravedigger who, upon his death, was buried in an unmarked grave.
  • Roderigo, #15902, survived 72 years at Willard. In the 1960s, someone wrote this observation in his file, "Years of institutionalization appear to have been a mistake, as far as duration, this man appears in perfect mental condition now."
  • And, unfortunately, many more.

Willard Psychiatric Hospital is in upstate New York, about 65 miles from Syracuse. After it closed in 1995, the curator of the New York State Museum drove there thinking he'd grab some old furniture or a nurses uniform, some small artifacts. What he found was over 400 suitcases, untouched for decades; four hundred lives, frozen in time, packed up in the attic of an abandoned building. From 1869 until it closed, over 50,000 people sojourned at Willard.

Why couldn't they keep their suitcases? What was so terrible about having a little something of their own? Apparently, plenty. In institutions, order is the rule. Not unlike the army they break you down until you re-emerge, remade in their image. You walk when they say walk, eat when they say eat, sleep when they say sleep. It's called ''hospitalism'' or ''social breakdown syndrome.'' Symptoms include apathy, withdrawal, and the loss of social skills. The difference between basic training in the Army and basic training in a state run hospital is that in the army, you get the opportunity to leave.

It is heartbreaking to wander through this online exhibit. Others have ventured through before me. Grace, at What if No One is Watching, wrote a very personal response that also raises the issues of gender, class, and race. If you haven't already, read it here.

Is it better today?

The human suffering illustrated by the lives of the suitcase owners continues today, often differing more in form than in substance from the lives of mental patients a century ago. Thousands are admitted to hospitals daily for treatment of emotional distress, often cause or aggravated by social conditions. If hospital stays are considerably shorter today, cue to aggressive use of medications and the service limitations of HMOs, the are no more marked by recovery than in the days of large state hospitals like Willard.

Hell no, it's not better! How many more people will be abused, how many more lives ruined, how many more unmarked graves, will we have to endure until all our people are free?

FREE OUR PEOPLE!
ADAPT

References:

The Willard Suitcase Online Exhibit. What They Left Behind:
Suitcases from an insane asylum tell of lives long lost. Gonnerman, Jennifer . Village Voice, 1-28/2-3-2004.
State Psychiatry Hospitals forced to Change or Close. Sobel, Dava. New York Times, 2-10-1981

Sunday, December 2, 2007

Picture a Family

When my girls were growing up, they had adult role models that identified their gender/sexual identity in many ways. Though I hate boxing them into categories, they were gay, straight, bisexual, butch, lipstick lesbians and more.

When I had those birds and bees discussions with my children... we talked about birds and birds and bees and bees too.

I also tried to teach them know that “family” is a very subjective term, that is best defined by the people in that particular family. We certainly did not fit the mythical family norm.

I was a single mom of two, who adopted another child as a single parent. My birth childrens' father was active in their rearing, as were other surrogate males; my adoptive daughter knew her dad. We had different names, and we were a family.

I moved away from my birth family when I married, but maintained a strong desire for family. I developed, a “family of choice.” My girls had nearby, aunts and uncles; to this day they continue to refer to them in familial terms.

They were my brothers and sisters. Who is to say these men and women were not my family. Perhaps the inheritance laws would denounce them as next of kin, but I have precious little to pass along anyway.

Take my friends Joannie and Anne. They met when Anne was pregnant with Johanna. It was nearly love at first sight; Joannie immediately became family, and we all joyously awaited Johanna’s arrival.

A few years after Johanna’s birth my daughter was babysitting for her “cousin”. Afterward, Anne dropped her off. I noticed she was fidgety. I poured her a cup of coffee and my daughter ran off to play.

“Why didn’t you tell Angie that Joannie and I were lovers… On the way over here I mentioned that I needed to stop by and pick up my anniversary gift for Joannie.” She spoke in a soft, concerned tone.

My daughter who had been in their home many times and apparently oblivious to the fact they shared a bed responded, “I didn’t know you were a couple… I thought you were roommates.”

Anne replied, “No, we’re a couple and it’s our second anniversary!”

Angie said, “Cool. What did you get her?” And just like that, she accepted them as a couple and was ready to celebrate. Oh, if only adults could be so open-minded.

Anne was pissed… at me! I was surprised. I explained to her, “I have yet to explain the relationship of others who dwell together to my kids. Did you want me to sit them down and say, “Kids… Auntie Anne and Joannie are special. They share special love between women and although the law won’t let them be married, it’s like they are.”

“Or, would you want me to accept your family as I would any other of my home-made family or neighbors, without explanation, and her realization as to the nature of your relationship come naturally, as it did?”

I was really asking. I felt in my gut, I had done it the right thing… but maybe I was wrong. It’s difficult to know, because society puts enormous pressures on its narrow definition of gender identity and even narrow definition of what constitutes a family.

“No… I guess… this was better. BUT YOU SHOULD HAVE WARNED ME.” she said, only half-kidding. (Oy, family!) :)

It is 20+ years later, and I still wonder if I did the right thing. The issues of gender, sexual orientation and family are so complex. What do you think?

(The proud mother in me cannot publish this blog entry without telling you... when Angie rejoined us... she brought with her a homemade anniversary card for Joannie and Anne.)

Thursday, November 29, 2007

No Short Cuts

Thirty years ago this month, with two other mothers, I started a parent advocacy group…

I ran into the kitchen to pick up the ringing phone. “I’m Mandy,” she shouted. For the next fifteen minutes I listened to her swear about every school district and bus official she ever contacted; but I did never learned why she was upset. I listened past her swearing and heard someone crying out for help.

I thought that we should meet... some place public. A public place would help her self-control and maybe I could find out what the heck was going on. “Can we meet?” I asked.

Ten minutes after we met at the diner, the manager asked us to leave. We spent the next two hours in my car; she screamed, cried, beat her fists against the dash and finally this young single mother got her story out.

Mandy’s, then 4-year-old daughter Sarah, is deaf. She attended early childhood classes at a public school across town. Every day the little yellow bus picked her up and took her to school. The driver would then take the rest of the students to another school and drop them off. The other bus riders were older, mostly boys who attended classes for children with behavior disorders.

Sarah began riding that bus and her personality seemed to change overnight. Mandy feared something bad was happening to her daughter. She wanted her daughter moved from where she currently sat, near the middle of the bus behind the driver, to the front row, across from the driver, so he could watch over Mandy’s precious little daughter.

It certainly seemed like a reasonable request.

One morning Mandy asked the bus driver to make the change. He refused. Sarah was not a problem on the bus he told her. The “bad boys” that needed his watchful eye had to sit in that seat. Mandy was not skilled in negotiations or anger management; she cussed at the driver and he drove off.

Mandy was no child of privilege. She had alcoholic parents and was more used to settling disputes with her fists than with words. She did not finish high school, got pregnant when she was 17, and got kicked out of her parents’ home. This situation exceeded both her skill and comfort level. Nevertheless, she wanted to help her daughter.

On work breaks, she called the bus service; never getting further than the operator, who hung up because Mandy could not stop swearing. She called the school secretary who also hung up on her for being obscene. She never got a chance to talk to the principle; the secretary would not put her through. She could not take time off for fear of losing her job.

She called the superintendent of school, members of the school board, the newspaper and other’s that might help her get her daughter’s seat moved. Everyone hung up on her.

And really, who can blame them. No one deserves that kind of verbal assault. On a different day, I might have done the same. I cannot say why I was able to get past the profanity. It was probably easier for me because her anger, for the most part, was not directed at me; and I'm not easily offended. Nevertheless, Mandy's language made even a bawdy character like me blush.

We finagled a meeting with the superintendent of schools. It was not easy. We assured him Mandy would “behave.” He invited other parents, more comfy with the administration than we, to observe.

I arranged for Mandy to come to my house and invited a friend to help me. We explained to her why everyone hung up. We promised to help her tell her story without rage. It was exhausting work.

Sometimes she would get up from the kitchen table and pace, looking for a word that might work. Often, she felt overwhelmed; she would cry and swear and stomp her feet.

We told her the people she was swearing at were the very people who had power to give her what she wanted. We told her how systems work. We encouraged her to find a different way to fight… to use the power of words to make her point, not to tear down others.

She replaced the words “god-damned-mother-fucker” with, “bus driver.” Rather than calling the young men on the bus racist names, she practiced using the words, “students,” and “boys.”

We role-played the upcoming meeting. My friend played the superintendent. I played Mandy. She watched and asked questions. She played herself and I coached. We tried different scenarios, different seating positions, different questions, and different tension levels. Mandy was nervous; so were we.

On the meeting day, Mandy met us at the district office. She was wearing a suit and held little 3x5 cards in her shaking hands. She sheepishly said, “I’m afraid I will forget.” We hugged her and said, “Great idea! You’ve got this! We’re so proud of you!”

When we entered the superintendent’s office, he was sitting at a table surrounded by chairs; not unlike my kitchen table, I thought. He started, “So Mandy, what’s up?”

She looked at her 3x5 cards and never once looking up, spoke, “My daughter is 4 and deaf. She is on the bus with much older students, mostly boys. She is acting more afraid lately and I am afraid the boys are picking on her. I want her seat moved to the front, across from the driver so he can watch her.”

The superintendent, who had certainly heard about Mandy reputation asked, “That’s it?”

“Yeah,” she heaved out.

“Done!” he blurted; and with that, the meeting was over.

We barely made it out of the superintendent’s office door when I grabbed Mandy and gave her a big hug and kiss. “You did it, Mandy. You changed things for your little girl.” I could feel her fainting in my arms. We held her up and walked out of the building.

Rarely have I seen such bravery. This young single mother, with very poor social skills, very little education, and little to no sense of propriety, kept trying; kept calling people until she found help. We felt obligated not only to help her, but to give her tools to continue to fight for her daughter. Then she took our advice, practiced new skills, learned a ton of information, went up against a formidable foe… and won!

I don’t know if Mandy ever thinks about that time; but I do… often.

No Condescending Saviors

We who are system savvy... we who have been activists a while, take too many shortcuts. I know I am sometimes guilty of it. But then I think of Mandy.

It would have been easy to call the bus company, saying I was Mandy’s representative and asked them to change Sarah’s seat; they probably would have done it. One quick phone call… less than five minutes time. It would have been so simple. But, we do a disservice to the people we want to help, and to our movement, by doing so.

We build movements by empowering people to speak on their own behalf. It’s slower, it’s messier, it's more work, and it’s the only real way to create new activists.

Someone did it for us; we must do it for the next generation.

Sunday, November 18, 2007

Voting Values

Conservatives have usurped the idea of "values voting". The term itself has come to represent a conservative agenda. Republicans were willing to go down in flames in'60s and '70s terms of an election or two, in order to establish a new core, a new base of conservative principles. Nixon expanded the base with his southern strategy. They are still winning using the same principles today.

About the same time, liberals and progressive stopped voting their values. We've become "pragmatists". Rather than looking for someone that represents our progressive, more equal-rights oriented values, we look for someone that is "winnable" and as a result, we're losing. I have grown to hate the question, "Is it (or he/she) winnable." Unless our goals are based on our views, hopes and values for the US and the world, we're going to continue to lose.

The gap between the rich and the poor is widening. We're working more hours, with less worker protections under worsening conditions. Our planet is less protected and more polluted. The Americans with Disabilities Act, Voting Rights Act and other seminal legislation protecting minorities are taking hay-makers to the gut. Our courts are setting back the affirmative action clock of progress for GLBTQ and women, people of color and other oppressed minorities. We've rolled back constitutional protections, definitions of torture, and they way we define the separation of church and state. We're leading the world in bullying and throwing away our self image of turning the other cheek. Diplomacyhas become just another word between dictator and disaster. We've given all that up in the attempt to win an election. And still we lose.

We've lost our way. We must get back to our values. Real leadership on progressive issues means we standing strong against discrimination, injustice, inequity, fascism, war and a host of other uncompromisable values.

We've got a real opportunity ahead of us. Just after the new year, states will be holding their caucuses and primaries. Vote your values, not some watered down version the Democrats dish out.

  • If we want peace, we must vote for the candidate that consistently votes against war and funding war.
  • If we think water-boarding violates the Geneva Convention, vote for the candidate that consistently speaks out against it, not the one who says, his/her ethics are situational.
  • If we want profit removed from health-care and every American covered, then we need to vote for a candidate whose plan that eliminates insurance companies. Accepting less may be pragmatic, but it compromises our values.
  • If your core beliefs are that all people are equal, vote for a candidate that believes people in the gay community have an equal marriage rights and that think money should follow a person out of an institution, when they choose to live in the community.
  • If you think the separation of church and states protects the church and the state, vote for the candidate that will strengthen the constitution.
Voting our values should not be a revolutionary idea; yet, we are told doing so is throwing our vote away. I hold that if we do not vote our values, we are throwing it away.

We may lose an election or two. But hell, we've already done that, voting for what is "winable".

However, if we do vote our values, a new wave of politicians will find us, and ask us to be their core. It may even give rise to a new party that believes a government should represent its people.

Monday, November 12, 2007

Who Should Represent People with Disabilities in Advertising?

We have all heard the cliché, “There’s no such thing as a stupid question.” However, the title of this piece provides a pretty good argument against the often-used phrase.

Why would there be any question about a person with a disability representing a person with a disability in an advertisement. Lest you have any doubt, let me ask these questions as a contrast:

  • Who should represent African-Americans in ads?
  • Who should represent women in ads?
  • Who should represent Asian or Latino in ads?

I cannot imagine anyone saying that the above minorities should have anyone other than members of their own community portraying them; not someone made up to look like them, or pretending to be them. Not today.

Yet, we still see ads like this one that recently appeared in the Joliet Herald-News.

Description of Graphic

None of the people pictured have a disability in the picture. The guy with the white cane is sighted; the guy in the wheelchair and the one using the walker are ambulatory without assistance; the guy using the TTY does not have difficulty using the phone. They are local politicians who should fire their campaign managers for bad judgment.

Who thought it would be a good idea to have able-bodied people representing someone with a disability?

Here's a suggestion. If you want to promote accessibility at your particular entity, show people with disabilities using your services. Or show the men pictured with someone who actually uses a white cane, wheelchair, walker or TTY.

Graphic 2: Description

The ad, for all its good intentions, is very inappropriate. I have no doubt that the people wanted to do something good. They are part of a noble cause… accessible businesses. However, their lack of sensitivity about appropriate representations is way off the mark.




Graphic 3 Description:

The picture is wrong on so many levels. It has no people of color and no women AND no people with disabilities. It looks like something straight out of the 1950s, not the 21st century.

This ad says to me, “We really can’t show real people with disabilities, because we should not have to look at them.” If not that, then this: “Only people who look a certain way are OK for advertisements… the rest of you should go hide.”

People with disabilities are as attractive and unattractive as the general population. They are quite capable of representing themselves in any ad. I know several people in the Joliet area that are at least as attractive as the older white men in the ad; and they represent diversity of gender, color and disability.

If the Accessible Cities Alliance does not feel a commitment to showing people with disabilities as important parts of their community (important enough to appear in an advertisement), they should reconsider their commitment to people with disabilities. If they do, then they should denounce the ad for its misrepresentations.

The racist pictures peppered through this article were once acceptable. I look forward to the time when the general population realizes ableist pictures of posers with disability fit into the same category.

Description: a newspaper ad reads:

Got Access? We do. You Should Too.

Pictured under the headline are four older white men:

  • Russ Slinkard, Joliet Region Chamber of Commerce and Industry. He is carrying a white cane.
  • Larry Walsh, Will County Executive. He is sitting in a wheelchair.
  • Tim Roolf, First Midwest Bank. He standing in front of a walker.
  • Jim Shapard, City of Joliet. He is standing facing the camera with his fingers on the keyboard of a TTY.

Under the picture it reads: By 2010, it’s likely that one in three Americans with have a disability. That’s a lot of purchasing power. Is your business ready?

We encourage business owners and property managers to create and promote full access for consumers with disabilities. What does that mean? It means providing equal access to parking, entrances, goods and services and restrooms. Consider how you can increase the value of your business and expand yoru customer base.

The Accessible Cities Alliance is a broad coalition of local leaders and disability advocates working to create access and opportunity. ACA offers valuable information and resources. If you need assistance, let us help. If you offer full access, let us know and then make sure your customers know too.

Good access is good business

Accessible Cities Alliance

Promoting disability compliance in the business community.

www.ada.411.com

815-729-0162 v

815-729-2085 tty

A message sponsored by The HeraldNews
Back to article.

Graphic 2. Description

Black and white photo of a white actor dressed up as Charlie Chan, an Asian character in movies from the 1930s through the 1950s. Back to article.

Graphic 3. Description

A black and white photo of Amos and Andy. It is two white actors dressed in blackface. Their representation of African-Americans was wildly popular on the radio and in movies. Back to article.

Thursday, November 8, 2007

Activism - The List

A while back I started keeping a list... a list of acts of activism. I promised myself that when I hit 100 I would publish them. If I read about some act in the newspaper, I wrote it down. If I participated in an event, I added it to the list. Little by little it started to grow; and today, I hit 100.

Activism is action on behalf of a cause, action that goes beyond what is conventional or routine. The action might be door-to-door canvassing, alternative radio, public meetings, rallies, or fasting. The cause might be women's rights, opposition to a factory, or world peace.

The above quote is from, "Activism, Social and Political." It is published in Gary L. Anderson and Kathryn G. Herr (eds.), Encyclopedia of Activism and Social Justice. I like it because it speaks to going beyond what is routine. To be a good activist, we must get outside our normal routine. No one ever created change by sitting back and watching.

I know there are more ways people can be activists. If you think of one, let me know. I'd love to add it to the list. But for now, here it is my list of ways to be an activist.

1. Act directly

2. Armed opposition

3. Attend a meeting

4. Ban something

5. Be controversial

6. Be militant

7. Be persuasive

8. Become rebellious

9. Be troublesome

10. Blockade

11. Blog on the Internet

12. Blow the whistle

13. Boycott economically

14. Build a website

15. Build community

16. Buy a billboard

17. Campaign

18. Canvass

19. Change expectations

20. Civil disobedience

21. Collaborate

22. Comment on editorials

23. Conduct a study

24. Debate

25. Demonstrate/protest

26. Design a poster

27. Distribute propaganda

28. Divest yourself

29. Draw a line in the sand

30. Empower others

31. Exhibit

32. Fill out a survey

33. Follow

34. Get out of the way

35. Go door-to-door

36. Guerrilla communication

37. Hacktivism

38. Have a memorial service

39. Hold a vigil

40. Hunger strike

41. Lead

42. Leaflet

43. Live Clean

44. Live Simply

45. Lobby

46. Make a call

47. Make a fuss

48. March

49. Mobilize support

50. Negotiate

51. Organize something

52. Parade

53. Participate

54. Pick a side

55. Picket

56. Plant an audience

57. Point to injustice

58. Practice pro-activity

59. Praise

60. Push

61. Question assumptions

62. Quote facts

63. Raise consciousness

64. Read about the subject/make yourself smarter

65. Recruit someone

66. Recycle

67. Reform a system

68. Reform your own behavior

69. Resolve a conflict

70. Revolt

71. Sabotage

72. Seek publicity

73. Send a check

74. Send an email/letter

75. Set an agenda

76. Set up an informational table

77. Sign petitions

78. Sing protest songs

79. Speak freely

80. Speak publicly

81. Sponsor a newspaper ad

82. Stage a sit-in

83. Stand on a soapbox

84. Start a riot

85. Stop cooperating

86. Strike

87. Subvert the paradigm

88. Support comrades

89. Support sympathetic candidates

90. Take a stand

91. Teach peace

92. Tell the truth

93. Theater for social change

94. Videotape

95. Volunteer

96. Vote

97. Wear a button

98. Witness silently

99. Work for judicial reform

100. Write a letter/manifesto/propaganda

Tuesday, November 6, 2007

A Tale of Two Teens: The Back Story

After I published A Tale of Two Teens last week, my husband suggested I send a copy of it to ER. I decided to write the writer. It was the writer, after all, who set the stage, wrote the dialogue and decided to kill this fictional young man with a progressive neurological disability. So; I began researching "The Test", the episode that aired November 1, 2007.

The writer, turns out, is also a doctor, a pediatrician, who practices part-time at Children’s Hospital in Los Angeles California.

~public service announcement~

ATTENTION:
Angeleno Parents!

grab all your children,
load them into the mini-van
and drive inland as fast as you can.

Lisa Zwerling has made a small splash in Hollywood. She not only wrote "The Test"; she contributed many scripts for ER in the four years she worked for NBC.

In a January 10, 2007 interview for the Oncology Times, Zwerling explains her philosophy of being a physician/writer, "We try to have the doctors on the show relate to patients the way we would relate to patients if we were working in the hospital." She says her clinical work is both a source of inspiration and a reality check for her writing.

If that is true, someone call the District Attorney to check her caseload for questionable deaths. In "The Test," she ordered death over life for a 13-year-old boy with a progressive neuromuscular disability. Mom is the boy’s legal guardian and the person entrusted to make his medical decisions for another five years. The doctors concocted a story and advised her that his lungs could not take the pressure of a ventilator and would blow them out. Then they lied again and said they had no choice other than to let him die.

I wonder what part of that story came from her clinical work. How does she really feel about their quality of life, and the value of their lives? What advice is she giving to parents of children with disabilities? Has she prescribed death for her patients with disabilities?

Do No Harm Should not be Fiction

Her ableist fiction writing has consequences. People watching will think, "That's true, I'd rather be dead than have to go on a respirator." They instruct family members, or write in their living wills, not to put them on a respirator.

Will anyone give them the information that they can have a joyful and long life using a simple breathing aid? It is even less likely anyone will get that information if they are poor, of color or do not speak English. Now imagine the consequences of her ableism inside a small examination room talking to a young patient's parents.

Considering Zwerling's omnipotence towards patients, it's no surprise she has landed on the nurse's short list of enemies.

Every year The Center for Nursing Advocacy issues a list of the best and worst media portrayals of the nursing profession. Zwerling's scripts each year make the "worst" list. In 2004 the center writes:

Though every episode of "ER" broadcast during 2004 continued the show's traditional role as the world's most influential purveyor of the handmaiden stereotype of nursing, these five episodes were some of the worst. They presented a compelling vision of a level one trauma center in which virtually all significant care was provided or directed by physicians, in which physician characters regularly performed exciting work that nurses do in real life; and in which the training of young physicians was of intense interest, but nurses were fungible assistants (and love interests) who did not seem to receive clinical training. We cannot recall ever seeing a nursing student on "ER;" certainly not in 2004.

Zwerling had her hand in each of the worst of the worst. This is a pediatrician with a God complex. Only people at the top of the pyramid determine what is right and true and worthy.

A Breach of Ethics

In a Christian Science Monitor article, Zwerling waxes on about how important it is to her that the characters she writes about are ethical creatures. It reads:

Dr. Zwerling says writers and actors want to look like the real thing, so she rarely has to put her foot down. But there are moments, such as the time a writer paired a plastic surgeon and a burn victim romantically - a flagrant breach of ethics.

"For a while, there was one version, of the script where they actually kiss in the intensive care unit," she says, shaking her head, adding this would never happen. "I went into my boss's office and laid down on the floor and said, 'Can we please not have doctors kissing their patients in the ICU, please?’ ” She won that battle, she adds. The lovebirds kissed in a firehouse instead.

Apparently, those ethics do not extend to caring for people with disabilities, or lying to parents.

The Writers' Strike

I wish the writers well in their efforts to get royalties for their intellectual properties. I think they deserve compensation for their efforts. But, it's creating a concern for me.

Lisa J. Zwerling, M.D. may be looking for more inspiration, by adding a few more hours to her medical doctoring schedule.

RUN everyone! RUN for the hills! But don't trip; you just may end up in her ER.

Information:

  • Lisa Zwerling 2111 Woodland Way, Los Angeles, CA 90068 (323) 512-3795
  • Zwerling serves on the Advisory board of DooF. DooF is FooD backwards. It is a new show heading for PBS.
  • In 2002 Dr. Zwerling worked at Department of Emergency Medicine, Children's Hospital of Los Angeles, Los Angeles, Calif, as far as I can tell, she still works there part time.
  • Dr. Lisa Zwerling, 4560 Sunset Boulevard, Los Angeles, CA - Specialties Emergency Medicine
Update - November 15, 2007: Read Valerie Brew-Parrish's review of the same program here.

Saturday, November 3, 2007

We don’t…

We don’t torture.
We use waterboarding as a conversational tool,
An icebreaker, if you will.
We don’t torture.
So because we don’t torture,
Waterboarding is not torture… if you are our enemy.

We don’t discriminate.
We have more because you have a problem.
A personal failure, if you will.
So because we don’t discriminate,
You have to be inferior… if you are of color.

We don’t kill.
We assist people into the next world,
A right-to-die issue, if you will.
We don’t kill.
So because we don’t kill,
Assisted suicide is not killing…if you have a disability.

Friday, November 2, 2007

A Tale of Two Teens

Last night's ER episode had me so upset I could not sleep. Two of the main storylines dealt with suicidal children. One was a young woman who left a suicide note on the ER computer saying she was jumping under a train. A nurse found the note, ran to the station, tackled the girl, and saved her life. She was going to get the help she needed.

The other storyline was about a 13-year-old boy with a progressive neuromuscular condition that required him to be put on a respirator. With his mother outside the room, he told the doctors he didn't want to be on the machine. The doctors lied to the mother, saying the respirator would blow out his lungs; so they could not comply with her wishes to put her son on the respirator.

The nurse, who saved the young woman at the train, fights for the young man, "He can think, he can communicate. Kids make bad decisions when they are 13", she yells.

The boy’s doctor lashed back at her, "Lying in bed... being hooked up to a ventilator... it's not a life. He doesn't want to lay around in bed being hooked to a machine waiting for a miracle... what part of that don't you understand.” It ends with the nurse threatening to report the young doctor. He grabs the phone from her, violently hangs it up and shouts, "I'm the doctor; it's my call." She runs away.

For the rest of the episode, we watch the boy die.

The juxtaposition of these two stories once again beats into the public consciousness, that people with disabilities are better off dead. I suppose the writers thought the 10 seconds of dialogue against his death provided balance for the 50 plus minutes promoting his death.

To fit their world view they forget the fact that people who use respirators don't lay in bed; that are up and active. Even one of their own, actor Christopher Reeve, wrote directed and acted while using his respirator.

I kept hoping that the nurse would bring in someone wiser, perhaps an adult who had used a respirator for years, maybe he would be a doctor, a college professor, or a dad; someone… anyone that could help the young man realize he would have a life… maybe even a great life with or without a respirator. The technology he needed would no more define him than any other technology he used. At the very least, I hoped the writers might have called in a psychologist, to deal with the child’s uninformed views. Nope, none of that. The only person called-in was the chaplain.

The only difference between the two suicidal young people is that one had a disability. It should have been a powerful argument against physician-assisted suicide; however they portrayed the young doctor as the fighter for patient right to die, not a co-conspirator to a young man’s murder.

The problem is that this fictional story is being played out in real life time and again; and it sickened me.

Update: I found additional details about this story and published them in this Back Story on November 5th.

You can see a 2-minute replay, a summary of the episode here:
http://www.nbc.com/ER/video/index.shtml#cat=new