Tuesday, July 31, 2007

A big thanks to Steve Drake of NDY for catching this breaking story.

Another case of hospital ethics gone terribly awry, medical professionals standing by in silence.

It's interesting that people with developmental disabilities are usually not eligible to receive organ transplants themselves yet are seen as fair game for organ removal.

It's also not clear to me if Ruben Navarro died from the death-hastening drugs or from removal of life support. Sharon


Report tells of errors in organ caseU.S. regulators detail how a potential donor was given huge doses of sedatives and painkillers as six people watched.
By Tracy Weber and Charles Ornstein
Times Staff Writers
March 2, 2007

It was to be the final medical procedure for Ruben Navarro, an altruistic end to the life of a critically ill 26-year-old who doctors said had no chance to recover. Staffers at Sierra Vista Regional Medical Center in San Luis Obispo were to disconnect him from the machine pumping oxygen into his lungs. After his heart stopped, transplant surgeons were to remove his organs so they could be used to save the lives of others. But in the late night quiet of an operating room Feb. 3, 2006, plans for that dignified end went terribly awry, according to a 76-page report by federal inspectors released this week in response to a Freedom of Information Act request from The Times. Police and the state medical board are now investigating whether the transplant surgeon brought in to retrieve Navarro's organs attempted to hasten the patient's death by ordering him pumped full of massive amounts of narcotic painkillers and sedatives. If true, the allegation would constitute a grave breach of the nation's transplant rules. In a stark recounting, federal regulators detailed how at least six people in the room, including Navarro's treating doctor, stood by without intervening, even though some later said they were disturbed by the actions of the surgeon and a nurse administering the drugs. The regulators from the U.S. Centers for Medicare and Medicaid Services have been looking into the hospital's role in the case. The amounts of the painkiller morphine and the sedative Ativan that the report says were given to Navarro were "between 10 and 20 times a usual dose of these drugs," said Dr. Philip S. Barie, president-elect of the Society of Critical Care Medicine, who was not involved in the preparation of the document."I don't think I've ever given doses of either drug in that amount," said Barie, professor of surgery and public health at Weill Medical College of Cornell University in New York. According to regulators, the mistakes began almost from the moment Navarro was wheeled into the operating room from the intensive care unit, where he had been on life support after arriving at the hospital in cardiac and respiratory arrest Jan. 29. Navarro, who suffered from severe mental retardation, had been living at a nearby long-term care home. In the operating room that night were the transplant surgeon and a colleague, both from Kaiser Permanente's now-defunct kidney program in San Francisco, as well as a nurse and coordinator from the regional organ procurement group that serves most of Central and Northern California, the report said. Also on hand were the doctor treating Navarro at Sierra Vista, the patient's intensive care nurse, an operating room nurse and other staff.At 11:10 p.m., a transplant surgeon ordered 100 mg of morphine and 40 mg of Ativan for Navarro, the report said. The surgeon is not mentioned by name, but several sources confirmed his identity as Hootan Roozrokh. At some point soon after, Navarro's breathing tube was removed. Legal restrictionAccording to state law, Roozrokh might already have crossed a line. Transplant doctors are not to direct the treatment of potential organ donors before they are declared dead. This restriction is designed, in large part, to ensure that organ retrieval does not take priority over patient care. Moreover, the report said, Roozrokh was not authorized to care for patients or order drugs at the hospital, according to the hospital's own policies. When Navarro's heart did not stop, Roozrokh ordered another 100 mg of morphine and 40 mg of Ativan, which the ICU nurse administered, the report said. Navarro still did not die. After about 30 minutes off life support — the time limit set to ensure the viability of the organs — the process was ended. Navarro was returned to the intensive care unit, where he died early the following morning. His organs were not retrieved. Later, the report said, the hospital's operating room nurse told inspectors that she had never seen narcotics or sedatives given to a patient during an organ donation procedure and that she "repeatedly asked" the ICU nurse and representatives from the organ procurement group about the medications. But she did not alert her superiors or attempt to intervene. The nurse's supervisor told inspectors she would have "gone to the OR and stopped the events" if the nurse had called, according to the report. (Operating room staff reported concerns about the incident days later.)Navarro's treating physician told inspectors she was "surprised at the quantity of the medications" given to her patient. Another nurse, who obtained the medications for the ICU nurse, said that the amount of drugs was "a red flag."According to critical care specialist Barie, 5 mg of Ativan an hour is enough to keep a desperately ill patient in an intensive care unit "very heavily sedated. "He and other experts said doses of medication can vary depending on each patient's circumstances. In their report, federal inspectors said the hospital was unprepared for the organ donation to take place. Most organ donations involve patients who have been declared brain dead. In cases like the one handled that night, known as "donation after cardiac death," the donor has suffered a devastating brain injury and has no hope of recovery, but still has minimal brain function. Removal of life support ultimately causes the heart to stop. Although Navarro was the hospital's first experience with such a case, two key operating room staffers — the nurse and technician — told inspectors that they were not given information about the procedure until that day. Regulators reported other lapses as well. ICU nurses typically do not administer medications in the operating room, but the hospital had no policy prohibiting that. In fact, the ICU nurse never documented that the medications had been administered at all, regulators found.

'Very confused'
In an interview with inspectors, the hospital's pharmacy director said he was "very confused by the whole situation." He told inspectors he later doubted that the amount of drugs ordered had been given to one patient. Later, he said, he was told that the hospital's risk management department was going to investigate what happened with the drugs and he was to "keep his hands off the situation," according to the report. Critical care and transplant experts said they were appalled at the case. The allegation that a transplant surgeon was dictating end-of-life care decisions is "scary," said Dr. Charles G. Durbin Jr., professor of anesthesiology and surgery at the University of Virginia Health System. "I don't think you can act in the best interest of the patient if you are in fact trying to harvest the organs for another patient," he said. Still, some experts said, it may be hard for authorities to prove that Navarro died as a direct result of the medications, because he survived for several hours after being taken back to his intensive-care room. Dr. Kevin Dushay, an assistant professor of medicine at the Brown University School of Medicine and a trustee of his regional organ bank, said he did not condone what allegedly took place. But "it's not like the patient woke up and said, 'I want to live' and somebody pushed a lot of drugs in them and killed them anyway," he said. An investigation into the manner and cause of Navarro's death by the San Luis Obispo County sheriff-coroner is expected to be finished next week.Roozrokh's colleague, transplant surgeon Arturo Martinez, is also under investigation by the Medical Board of California for his possible role in the incident. Neither doctor was working on behalf of Kaiser that night, but rather on behalf of the regional organ procurement group, as is common among transplant surgeons. Roozrokh's attorney, M. Gerald Schwartzbach, said there was plenty of blame to go around in the case. He said the coordinator from the procurement group and Navarro's treating physician could have asked Roozrokh to stop but didn't. Phyllis Weber, chief executive of the California Transplant Donor Network, the procurement group involved, declined to comment in detail on the conduct of the coordinator. But she said it was "unfair" for Schwartzbach to suggest that the coordinator did not intervene. "She did a great job under the circumstances that she was presented with," Weber said. "When all the details become available, I think we will be able to demonstrate that."

Letter of reprimand
Weber's group was issued a confidential letter of reprimand by the United Network for Organ Sharing, the federal contractor charged with ensuring the safety and equity of the nation's transplant system.Joel Newman, a spokesman for UNOS, said he expects the issue of how to handle such donations to be taken up in detail at the group's meeting later this month. Transplant experts and lawmakers nationwide are agonizing over the potential impact that the alleged breach of transplant ethics could have on organ donations. "These allegations are terribly upsetting," said Sen. Charles Grassley (R-Iowa), who has been investigating oversight of the nation's transplant network. "It's the kind of thing that erodes public trust in the transplant system and demands a thorough investigation," he said. The Navarro incident has proved even more problematic for Sierra Vista, a 165-bed hospital owned by Tenet Healthcare Corp. While investigating the transplant case, regulators discovered serious violations in many areas and threatened to pull the hospital's Medicare funding last fall. After Sierra Vista promised changes, the Centers for Medicare and Medicaid Services relented. Sierra Vista spokesman Ron Yukelson declined to comment on individual failings identified by regulators, including major problems in its pharmacy. The nurse cited in the report as giving Navarro the drugs was reassigned to administrative duties pending completion of an investigation, and the conduct of Navarro's treating physician was examined as part of a confidential peer review process, Yukelson said. The physician, who was not named, remains in good standing on the staff, the spokesman said. The pharmacy director, who was not named either, has since left the hospital for another job, Yukelson said. "This event was triggered by an outside physician that came into our hospital and violated our policies," the spokesman said. "Deficiencies were noted. We addressed them."*tracy.weber@latimes.comcharles.ornstein@latimes.com

Saturday, July 28, 2007

Rebecca Badger, Someone to Remember

Eleven years ago in July, Rebecca Badger died from a lethal injection administered through Jack Kevorkian's home-made "mercitron" contraption. Badger was 39 years old, a single mother of two, with a history of psychiatric illness, attempted suicides, and drug and alcohol problems. After complaining of severe muscle spasms, Badger was mistakenly diagnosed with MS whereupon she sought out Kevorkian to help end her life.

Her daughter Misty is left to wonder, "At first I was so convinced she had MS. But now I think people who have a mental illness can manipulate people around them really good. Maybe that's what happened here." Badger's primary doctor acknowledges there was never any objective evidence for her complaints of pain and admits she may have been faking it.

We'll probably never know the source of Badger's reported pain. What we do know is that this 39 year old woman had psychiatric disabilities, was Kevorkian's 33rd victim, and left two grieving daughters behind. Rebecca Badger is missed by those who cared about her and those she left behind when Kevorkian helped to end her short life.

Source: The Suicide Machine (1997). The Detroit Free Press Inc.
Petition telling Congress to Pass the ADA Restoration Act

As noted in a previous post, the ADA has come under attack from a series of court decisions that have drastically narrowed the category of who can qualify as a person with a disability.

Here is the link to an important petition you can sign telling Congress to pass the ADA Restoration Act, which will help undo the damage done by the courts and clarify the ADA's intent.

The petition is written by Senator Tom Harkin, who is also the author of the restoration act.

Thursday, July 26, 2007

On the 17th Anniversary of the ADA:
Remembering Justin Whitlock Dart, Jr.

Justin Whitlock Dart, Jr. (August 29, 1930 - June 22, 2002) was an American activist primarily known as an advocate for people with disabilities. He co-founded the American Association of People with Disabilities (AAPD) and is considered by many to be the father of The Americans with Disabilities Act of 1990, which was signed into law by President George Bush on July 26, 1990.

Below is what Justin said when the ADA was signed. :

ADA: Landmark Declaration of Equality
By Justin Dart

President George Bush signed the Americans with Disabilities Act on July 26, 1990, a landmark date in the evolution of human culture.

Throughout all of reported history until recent decades, people perceived as having significant disabilities have been treated as sub-humans. At worst they were killed or left as beggar-outcasts to die, at best they were cared for through subsistence welfare, out of sight and mind in institutions and back rooms.

With the development of modern medicine and social responsibility, millions of 20th Century humans are surviving previously fatal conditions and living on with significant disabilities. These individuals have a great potential to be happy, productive members of their communities. However, our best efforts to fulfill this potential have been consistently limited by a massive residue of prejudice and paternalism. Our society is still infected by an insidious, now almost subconscious assumption that people with disabilities are less than fully human, and therefore are not fully eligible for the opportunities, services and support systems which are available to other people as a matter of right.

More than two decades ago many of us in the disability community concluded that Americans with disabilities would never achieve full, productive citizenship until this nation made a firm statement of law protecting their civil rights.

The Americans with Disabilities Act is such a law. It establishes a clear and comprehensive prohibition of discrimination on the basis of disability. Taken in combination with previously existing disability rights law, it provides a sound legal framework for the practical implementation of the inalienable right of all people with disabilities to participate equally in the mainstream of society. It extends to people with disabilities the same protection of their rights that is already enjoyed by the members of all other minorities.

Most importantly, ADA is a landmark commandment of fundamental human morality. It is the world's first declaration of equality for people with disabilities by any nation. It will proclaim to America and to the world that people with disabilities are fully human; that paternalistic, discriminatory, segregationist attitudes are no longer acceptable; and that henceforth people with disabilities must be accorded the same personal respect and the same social and economic opportunities as other people.

ADA opens the doors of opportunity for millions of isolated, dependent Americans to become employees, taxpayers and welcome participants in the life of their communities. It prepares the way for the emancipation of more than half of a billion of the world's most oppressed people.

I am proud of America. I am proud of President Bush, Attorney General Thornburgh and Boyden Gray. I am proud of Senators Harkin, Hatch, Kennedy and Dole. I am proud of Congressmen Hoyer, Owens, Bartlett, Mineta, Fish, Brooks and all the great members of Congress who supported ADA. I am proud of former members Lowell Weicker and Tony Coelho. I am proud of Bob Silberstein, Bill Roper, John Wodatch, Melissa Schulman, Bob Tate, Maureen West and all the great Congressional and Administrative staff who authored and fought for ADA.I am proud of Pat Wright, Lex Frieden, Evan Kemp, Sandra Parrino, Paul Marchand,Wade Blank, Elizabeth Boggs, Liz Savage, Marca Bristo, Judy Heumann, Arlene Mayersonand the thousands of other patriots who have struggled for long, hard years in awilderness of prejudice and paternalism for the victory of ADA.

Once again America has passed the torch of liberty and productivity to the world.All who love justice must unite in action to protect our hard won ADA rights, and to ensure that they are implemented through strong regulations, and enforced in every community.

We of the disability community must communicate to America that full compliance with ADA can be profitable for all citizens, and we must join in cooperative action with government and theprivate sector to ensure that all will profit.

But ADA is only the beginning. It is not a solution. Rather, it is an essential foundation on which solutions will be constructed.

We must undertake a courageous reallocation of our society's resources from paternalism to independence and productivity. We must invest in a continuum of new and strengthened programs to liberate people with disabilities from dependency, and empower them to be equal and productive participants in the mainstream: Productivity-oriented education for all citizens. Economic, technological, independent living, vocational rehabilitation, transitional, personal assistance and community based supports for productivity and quality of life. Prevention. Affordable insurance and health care for all. Incentives for productivity to replace disincentives. Accessible communications, transportation, housing, and completely new communities that are accessible as a whole.

A large agenda? Certainly! But no larger than that which faced our patriot forefathers at the successful conclusion of the revolutionary war.

Like them, we have accomplished much. Like them, we have a profound responsibility to make a bold declaration of equality real in the lives of hundreds of millions of people in futuregenerations.I believe that we will unite to fulfill that responsibility. Because I believe in you, the patriots of ADA. And I believe in you, the patriots to be.

Together we have overcome. Together we shall overcome.

Thanks to Susan at Disability Soapbox for the heads up.

Wednesday, July 25, 2007

FRIDA Rocks at the Disability Pride Parade!

On Saturday, July 21, for the fourth year in a row, Chicago hosted our annual Disability Pride Parade and for the second year in a row, FRIDA marched!

Between 55 and 60 different groups, local, national and international, marched up Dearborn Avenue in Chicago's Loop to celebrate disability diversity and pride. For more information about the parade, see http://www.disabilityprideparade.com/.

Several FRIDA members, family and friends dressed up in our FRIDA tshirts and got a monobrow/moustache "paint job" in honor of Frida Kahlo! We even had two "FRIDAs" under the age of five. We marched with our FRIDA banner and led chants such as "How do you spell power? F-R-I-D-A!" (sorry ADAPT! we did do a couple of A-D-A-P-Ts too!) Our group was incredibly enthusiastic and energetic as we marched to Daley Plaza!

The parade ended up at Daley Plaza and we had a table right next to the famous Picasso. We hauled out our stock of FRIDA shirts and they sold like hotcakes. We also networked and invited community members to our next meeting, which by the way folks, is Tuesday, August 21 from 5:30 to 7:30 at 115 W. Chicago.

Parade step-off was at 11 am and we were at Daley Plaza by 12. From 12 to 3 the parade organizers put on a great show of festival entertainment. Now, I'm not completely sure but there were definitely hundreds of people at this event...if I could guess, between 500 and 700 people participated overall. Tabling groups included a range of service agencies and disability pride vendors.

Why is this parade important? Honestly, the most valuable aspect of this parade is provdining a place where anyone in our community can be with others who share the disability experience. For first time visitors, it's often overwhelming to see the sheer number of folks with disabilities confidently mingling, browsing, dancing to the music, getting sunburned...together. We have so little time to feel a sense of community pride 364 days of the year that it's great to have one day where we can recharge our batteries to fight the good fight for the rest of the year.

If you, readers, live in a community where you don't have much going on in the way of disability community cultural events, then attending this parade is a good way to get a taste of what is possible in disability culture. We in Chicago are incredibly proud of the disabled artists, writers, dancers, activists, and just general people who have built a sense of real community over the years. In Chicago, disabled people ARE NOT TOKENS. We really are brothers and sisters forming our own kind of family. Some of us are more out about our disability than others, but we know that the day will come when disability shame will die.

Until then, in Chicago, we are over 600,000 disabled residents strong, and we will fight to ensure that someday every last one of those 600,000, and the hundreds of millions of people with disabilities around the world, will live with full access to all parts of life. FRIDA is proud to be part of that fight.
ADA Restoration Act

On July 26, an Americans with Disabilities (ADA) Restoration Act is going to be introduced in Congress which will allow people with disabilities to focus on alleged employment discrimination instead of having to prove that they are disabled enough to warrant ADA protection.

According to this press release from the AAPD, the courts have sided with business employers against people with disabilities who challenge employer discrimination 97% of the time. Actually, the courts have created an absurd situation that allows employers to say that a person is too disabled to do the job, but not disabled enough to be protected by the ADA. As one example, a person with a condition such as epilepsy or mental illness who can manage their condition with medication or "mitigating measures" is viewed as too functional to have a disability and is denied the protection of the ADA from employment discrimination.

Have you ever been in a situation where you were considered "too functional" for ADA protection in an employment situation?

See here for steps you can take to help ensure the support and passage of the ADA Restoration Act.

Monday, July 23, 2007

Poem Recited at Disability Pride Parade Open Mic Night

Disabled Lovers
Two wheelchairs as one
By Monica Heffner

There’s nothing better than a man with a 14 -INCH- French- Catheter
We have so much in common
Our turn ons are roho cushions, padded arm rests, wheelie tippers and straight plated footrest

My pet name for him is my little Quickie
His pet name for me is Apria
He’s my wheelchair doctor when I’m feeling a little sick and needy

For fore play we use a reacher and a magnifying glass to arouse our senses.
Our checklist for sexual play consist of gel and a pump. (use your imagination)
When we feel real kinky we invite our Personal Assistant in our circle to assist us.

My Disabled Lover knows what I like and what I don’t like
He knows I like my under-pad/ chucks spread on the bed horizontal NOT vertical
He knows I like my therapeutic pillow between my knees NOT my thighs
He knows I like my night bag hung on the side of the bed toward the foot NOT the headof the bed
When I come home from work feeling tight around the shoulders and legs, he does this freaky thing called Range of Motion to loosen me up.

What a man! Ladies

Disabled Lovers are like One...
Two wheelchairs as One
Thank you
Remembering Katie McCarron

Born July 22, 2003
Died May 13, 2006

Thanks to Kristina Chew at Autism Vox for reminding us that yesterday, July 22, would have been Katie McCarron's 5th birthday.

Rest in peace, Katie.

Saturday, July 21, 2007

4th Annual Disability Pride Parade

Disabled, Proud, Present, Diverse: Saturday July 21, 2007, Chicago, Illinois

To our Chicago readers: Members of FRIDA will have a table at this years parade and will be selling FRIDA t-shirts and membership. Please drop by. We look forward to seeing you.

More information and details about the parade can be found here.

Thursday, July 19, 2007

Update on sex abuse charges at Delaware Psychiatric Center

An update on the story about the alleged sexual abuse of a 20-year old girl with autism by another patient at the Delaware Psychiatric Center, and claims by nurses that they were threatened after reporting cases of abuse: the News Journal reports today that hearings to examine the allegations will be held in August.

Full story here.

Tuesday, July 17, 2007

Woman is locked out of Texas nursing home after rape

Its difficult to believe this can happen, but here it is ...

According to an article in the Houston Chronicle, a nursing home in Texas City locked out a mentally disabled woman after she made a rape charge against an employee of the home. The man was later charged with sexual assault.

In a lawsuit, filed by the mother of the woman (named Jane Doe 1 in the lawsuit), HRA Village is accused of locking the woman out of the nursing home facility after tests for rape came back positive.

According to the lawsuit, Henry Lewis Jones, 54, targeted the daughter (named Jane Doe 2 in the lawsuit) after she reported witnessing the sexual assault of other residents at HRA Village. He assaulted Jane Doe 2 several times between March and July 2006.

Jane Doe 2 was only taken to UTMC for an examination after her mother insisted. The suit also claims that HRA Village failed to report the allegation of abuse to the Texas Department of Again and Disability Services, as required by law.

The Texas Department of Aging and Disability Services’ website shows that HRA Village was cited for failing to report abuse incidents and for failing to prevent the use of seclusion and restraint as forms of punishment.

Thanks to Legal Medicine for this post.

Sunday, July 15, 2007

About the Petition

Thanks to everyone who signed the Disability Advisory Committee petition! We are still collecting signatures to demonstrate ongoing support but we have removed the link from the title. If you still want to sign, and we encourage you to do so, please visit: http://www.gopetition.com/petitions/creation-of-an-ama-disability-advisory-committee.html

If you are a doctor, especially if you have a disability, and you are interested in seeing professional medical organizations create space for disability advisory groups within their structures, please contact us at ambity@aol.com.

Thank you.


Saturday, July 14, 2007


First, many apologies to our blog readers for this delayed update about events in June. If you are on our e-mail list, you will have had a more timely alert since at this time, that is our fastest way of hitting you all. E-mail me at ambity@aol.com if you would prefer to be on the e-mail list.

FRIDA, ADAPT and Not Dead Yet made a really prolonged effort to advocate with the AMA on disability rights over the course of the AMA Annual Meeting, which was held in Chicago in June.

BRIEFLY, OUR CURRENT STATUS: Our advocacy approach is currently aimed in two directions. First, we are advocating with AMA headquarters staff to have them put us in touch with two contacts within AMA headquarters staff, one for legislative advocacy on the Community Choice Act and one for the staff coordinator for the AMA Ethics Group. This request was delivered to Mike Lynch, senior VP for external communications for the AMA. We have yet to hear back from him.

Second, our most public thrust during our advocacy at the Annual Meeting was to get some doctors to work on a resolution to set up a Disability Advisory Committee. Through our public presence there, we were able to let hundreds of doctors know of our cause, and we also worked some contacts so that now we are at the point where some AMA members have come forward to sponsor a resolution and our coalition is working with them to craft the language. This working relationship is a very good sign but of course, we need to see a finished resolution first, then see it passed by the member organization to which the sponsors belong, and THEN and only THEN will it be brought to the full AMA for a vote, so this process is going to take a while. Bear with us all.

We will continue to need our community as we work on these points. We're doing well, you all!!!


OK so for those who like action stories, here's what went down. This is edited from the original alert emails to the listserv.

Sunday, June 24: A group of activists from FRIDA, ADAPT and Not Dead Yet "visited" the AMA Annual Meeting at the Chicago Hilton. We fliered up and down Michigan Avenue in front of the Hilton and asked people to sign the paper version of our petition. We collected about 90 signatures. The doctors were easily recognizable via their conference name tags with little ribbons attached to them. Many docs shied away from speaking to us although a few were brave enough to talk with us about why we were there. Probably the most positive thing we got out of the docs was from a medical student who came out to tell us that she had overheard a group talking about whether a particular membership group could bring up a resolution to form a Disability Advisory Committee.

Security: As soon as about four of us stood together, hotel security asked if we were the protesters. We responded that we were not there to protest (it's a technicality...we were making ourselves available for dialogue is another way to put it) and security left. We tried negotiating with security to let us in to talk to people, but naturally that was not going to happen. Ok, so we educated a lot of people, got a feel for what was going down...

A note on sports: This campaign has had a history of scheduling, or trying to schedule, events on major sports days in Chicago. Sunday was no exception...Chicago hosted the US vs. Mexico soccer match, so thousands of (semidrunk) fans were streaming past on their way to Soldier Field. Made things interesting.

Many thanks to: Tim Sullivan, Donna Shaw, Mary Delgado, Monica Heffner, Sharon Lamp,Veronica Martinez, Emylee, Rahnee Patrick, Gary Arnold, Trevor Holmes the Popsicle Boy, Diane Coleman, Gloria Nichols, Nestor, Lluvia and Sol, who was our tiniest activist but did a great job blocking the sidewalk by crawling in random directions.

Monday, June 25: Amber put on a suit and delivered copies of the online Disability Advisory Committee petition to the registration desk at the AMA. This took about five minutes. The petitions were delivered to the CEO, the incoming and outgoing presidents of the AMA, and the chair of the Council on Ethical and Judicial Affairs (CEJA). Chicago advocates also determined that we needed to go back to the AMA to keep pressing our demands, so throughout Monday we organized.

Tuesday, June 26: Tuesday morning, Amber received an email from the chair of CEJA, Dr. Sade, who told us that he is stepping down as CEJA head and Dr. Mark Levine of Colorado will be the next chair. Amber contacted Dr. Levine with our agenda and a request to work together. Tuesday afternoon however was our big planned action. Our Tuesday action almost didn't happen. We had arranged to meet at 4 pm. At 3 pm, clouds gathered and we heard thunder, then giant flashes of lightning and then a WALL of rain came down on Chicago. We stuck to our plan and did not call off the action. Some of our group were not able to attend because of the rain, but eventually we collected five people at a local sandwich shop around the corner from the Hilton. We were: Mike Ervin, Larry Biondi, Alva Rodriguez, Sarah Triano, and Amber. Rene Luna joined us later in our action for a total of six. After gathering we headed over to the Hilton's south entrance. Amazingly, we were all able to enter the hotel, find the elevators, and make our way to the second floor without interference. When we arrived on the second floor, we found groups of doctors in evening wear getting ready for the inauguration ceremony of the new AMA President, Dr. Ronald M. Davis, at 5 pm. Amber (sorry to say) momentarily forgot the floor plan of the ceremony and we ended up walking left instead ofright, barging in on the professional photo op with all the AMA officers. The doctors looked startled but did not approach us. Amber recognized and approached the outgoing president and asked him to get us someone who would work on a Disability Advisory Committee. He passed us off to a staffer, a woman with the last name of Ferrara, who told us to wait a second and then apparently called security. Security descended upon us to try to talk us away, but after some haggling the group simply began heading towards theceremony (we figured out where it was). Amber, Mike and Larry made it all the way to the entrance of theballroom, where we negotiated for some time with security. Security did not know how to handle us and kinda lost their heads...one guy bumped Amber's breast and she gave him hell on that. They were attempting to physically block us from entering. All the while, dressed-up docs were passing by looking at the scene. Alva, Sarah and Rene were haggling with security by the elevators. Eventually, security brought down their chief. Mike, Larry and Amber negotiated with the security chief for a while and eventually came to a settlement where the chief would get an AMA staffer to talk to us. We got parked just outside the foyer to theballroom...docs were still pouring. Sarah, Rene and Alva joined us. The chief came back and said the organizer of the Annual Meeting said they would try to secure a meeting with AMA staffers for the next morning at 10 am. He would not name this organizer. He said that because of the ceremony, no one could confirm anything till 8:30 pm or so. We said we would stay until we got a confirmation. The chief said that if we did that, he would have us arrested. We asked for a minute to consider theproposal. We conferred. We had agreed not to get arrested, but we would hold him to this promise and show up at 10 am the next morning regardless of what they said. We told the chief this and he gave us his cell number. We then left and hung around outside the Hilton, where Sarah Watkins joined us and got the rundown.

Later that night, the chief called Mike Ervin, apologized, and said the AMA would not meet. Mike and Amber then recruited to see who could go at 10am the next morning and demand a meeting anyway.

Wednesday, June 27: Rahnee Patrick, Sarah Watkins and Amber met at a coffee shop to head in to the AMA at 10 am. We decided we would request to talk with someone at the front desk to get us the organizer of the event. We went in, made a request of the staffer, who we think then called security. Doctors were pouring out of a conference room on their way to depart the convention. We decided to go against the flow and seek a staffer in the room. We made it almost to the elevator when security came up with about eight people. We reiterated that we had made a request of the staffer and it was not honored. Amber demanded to talk to the security chief. The chief showed up and we reiterated our request for a meeting. Rahnee did an excellent job of stating very forcefully why the AMA needed to meet with us. We also reiterated that we did not have to be doing this this morning, that the AMA was fully aware we were going to show and could have simply met with us and avoided all of the security hassle. We came to an agreement with the chief that he would seek the organizer and try to get someone to talk with us and schedule a meeting. However we would have to wait outside. We agreed to wait outside, at which point Mary Delgado joined us. Doctors were waiting for their rides and giving us the hairy eyeball. The chief came back and said he had spoken with someone but needed to get more time with them. He went back in, then came out with Senior VP of Communications Mike Lynch and another AMA staff person. Lynch was at our meeting in February with the AMA. We reviewed what had happened that morning and what we wanted (yes, we talked about the Community Choice Act). They wanted to know why we were bothering with the actions if passing a resolution was the way things worked. We pointed out that they have headquarters staff on legislative policy and ethics who don't necessarily follow AMA protocols for running programs. We wanted a phone number for a legislative staff person, and a phone number for someone we could work with from the Ethics Group. Rahnee and Sarah provided testimony about why our partnership is important. Lynch and his staff member heard us out, we had a back and forth, Amber said she wanted the contact info by the end of the days ince we've been waiting six months, Lynch said he couldn't promise that and then he left. So we are at that.

However bear in mind as we stated before, we are working to get some AMA members to sponsor a resolution!!! So keep up the awareness campaign out there among doctors and the disability community!





And that, friends, you know it's where we gotta go.


Friday, July 13, 2007

New York Court Approves Electric Shock Against a Woman's Will

In a 7/2 decision, the New York Court of Appeals has turned down the appeal of Simone D., who had sued not to be put through electroschock again. According to the Bazelon Center’s report, Simone D., who is Hispanic, “had already received 148 ECT treatments over 12 years in the hospital. The hospital sought permission to administer another 30 treatments against Simone’s will.”

From the majority opinion:

At a hearing held on the petition, Dr. Ella Brodsky, a licensed psychiatrist and the person who administers the ECT at Creedmoor, testified that the appellant suffers from a “major depressive disorder, severe, with chronic features” and was incapable of making decisions regarding her own treatment. In fact, Dr. Brodsky asserted that during a meeting to discuss treatment, at which the appellant, her Spanish-speaking attorney, Dr. Brodsky, and the treatment team were present, the appellant refused to respond or even make eye contact.

A couple of points (for more, see here and here):

1. Electroshock, or ECT, Has No Proven Benefits.

For more information about ECT and it effects, read the paper "Understanding and Ending ECT: A Feminist Imperative" by academic and psychotherapist Dr. Bonnie Burstow.

2. It has been proven beyond reasonable doubt that ECT causes permanent damage to the brain

3. Most Electroshock patients (between two-thirds and three-quarters of patients) are elderly women.

According to the activist website endofshock.com, ECT:

1) This is a legacy of patriarchy, where women continue to be coerced, overtly or subtly into psychiatric treatment.
2) This is also a legacy of sexism, where “’masculine“ stoicism is valued and feminine” qualities such as emotional expression are classified as psychopathological. It is also related to sexism in that social and economic inequality is still a big factor in our society, and understandable stress reactions, sadness and confusion are
interpreted as “symptoms of mental illness.”
3) Women, compared to men, are expected to be passive, and they may be punished or silenced for speaking out and complaining. When a woman is being considered for electroshock, one should ask, “What is important that she not remember and tell about?” Or “What is it that the others do not want to hear or look at?” Often it is abuse, always it is difficult or disruptive conduct that makes others feel uncomfortable or threatened.
4) Women are on average more open to getting help than men. In our psychiatric system, it is assumed that human problems and crises are due to biologically or genetically based “mental illnesses.” The primary treatment is psychotropic drugs, so women reaching for help get drugs, these drugs often do not help or actually worsen their situation; hence, the backup treatment of electroshock is brought into play.
5) Elderly women often cannot handle psychotropic drugs because of aging and infirmity, so are considered prime candidates for electroshock.
6) Women of perimenopausal may be experiencing depressive symptoms due to undiagnosed hormonal or endocrine changes.

4. Simone G. is a native Spanish speaker, but treatment by a Spanish-speaking therapist was tried “for only a few weeks.” Simone G., through her lawyer, has requested that Spanish-speaking theray be resumed instead of ECT, but this request has been refused.

5. What you can do to help.

Reclusive Leftist has provided the following contact information for four New York politicians who can be emailed, faxed or called asking them to intervene on behalf of Simone G.

** Gov. Eliot Spitzer:Complete the web form at: Phone: (518) 474-8390. Fax: 518-474-1513.

** Lieutenant Gov. David Paterson:He is legally blind and has been charged by the Governor with dealing with disability issues.Complete the web form at: (518) 474-4623. Fax: (518) 486-4170

** Office of Mental Health Commissioner Michael Hogan:Phone: (518) 474-4403. Fax: (518) 474-2149.

** Peter M. Rivera, Chair, New York State Assembly Standing Committee on Mental Health, Mental Retardation and Developmental Disabilities:Email: riverap@assembly.state.ny.us Phone: (718) 931-2620. Write: 1973 Westchester Avenue; Bronx, NY 10462 USA.

The Wittenberg Center also has some sample comment text you might use and some more background on Simone D.’s case.

Thursday, July 12, 2007

Medical research and the participation of children

From the Seattle Post-Intelligencer

Full text here.

Should children have a say in their own medical care?
At what age is a child old enough to understand what his or her options are?
Do the rules change if it is an experimental treatment or a research trial?
What if the child, owing to mental illness, is not able to participate in the decision about treatment?

Children's Hospital and Regional Medical Center in Seattle will be discussing these and other ethical questions at a conference this coming Friday and Saturday (14 and 15 July) at the Bell Harbor International Conference Center, 2211 Alaskan Way, Pier 66, Seattle. The conference is sponsored by the Treuman Katz Center for Pediatric Bioethics and is called "Current Controversies: Navigating Conflicts When Parents and Providers Disagree About Medical Care." For more information, visit the conference Web site.

Wednesday, July 11, 2007

Sex abuse of patient ignored, mom says

Janice Ambrose is trying to get her 20-year-old daughter, who has autism, out of the Delaware Psychiatric Center. Ambrose says that her daughter was sexually assaulted by another patient. Staff of the DPC have not responded to her concerns; the use of excessive force against patients has been reported by some nurses and other staff at the center.

Ambrose initially struggled to have her daughter civilly committed to the center last year; she is now working to get her out as the hospital deals with new allegations of patient abuse and mistreatment.

On a recent visit home, Ambrose noted that her daughter "was so drugged, she couldn’t chew her food," and when she visited her daughter last week at the DPC, she found that her head had been shaved. "

Yesterday's News Journal notes that reports of patient abuse, neglect or mistreatment at DPC have increased from 35 in 2001 to 119 last year. The increase, said DPC Director Susan Watson Robinson, is proof that her administration is keeping better track of such incidents. So far this year, 84 incidents have been reported.

But now that the hopsital is identifying abuse and mistreatment, what steps will it take to ensure that Ambrose’s daughter and other patients are provided with real care and treatment?

Link to full story here.

Monday, July 09, 2007

NEJM Article About Medical Futility Laws

The New England Journal of Medicine has an article by Robert D. Truog, M.D., a professor of medical ethics and pediatrics, that comments on the Emilio Gonzales case in Austin, Texas. The article gives a good overview of the provisions of the Texas Advance Directives Act, which Emilio's doctors invoked to authorize the removal of his life support, and it presents a variety of reasons that doctors give to justify their refusal to continue treatment. It also discusses hospital ethics committees, which are authorized to decide whether or not it is ethically appropriate to trump the surrogate's wishes to continue treatment, and raises a number of objections to them, noting in particular their constitution, which in the case of Emilio, he argues, was hardly "a jury of peers for a low-income woman of color and her infant son." He discusses various suggestions for improving hospital ethics committees, and the pros and cons of these, including those associated with the formation of "ad hoc committees."

To listen to an interview with Dr. Truog go to: http://www/nejm.org.

Sunday, July 08, 2007


From the Atlanta Journal-Constitution

Following is an excerpt from the Atlanta Journal-Constitution (8 July 2007) about Louise Jones, who was sterilized in 1950 at the Gracewood Training School in Augusta as a result of Georgia’s state-imposed sterilization program. Georgia’s involuntary sterilization law was signed into law in 1937 and came 30 years after Indiana’s, the country’s first. The Georgia law authorized a state Board of Eugenics to decide which inmates of mental institutions should be made unable to conceive.

Georgia’s law stayed on the books until 1970, when legislators mandated consent of a patient’s parent or guardian before any sterilization.

Records that Jones requested recently from the Georgia Department of Archives and History show that on May 29, 1950, the acting superintendent of Gracewood applied to the State Board of Eugenics to sterlize Jones, described as an “inmate of the Georgia training school for mental defectives.”

The application described her as a “mental defective, low grade moron” – a term at that time that was acceptable to describe someone with mild to moderate developmental disability.

The letter continued to say that "if released without sterilization," Jones "would be likely to procreate children who would have a tendency to serious mental or nervous disease or deficiency."

After leaving Gracewood in her early twenties, Jones married twice and was widowed both times. Both husbands had been at Gracewood, and both were also sterilized there.


At Gracewood, Jones shared a room with several other girls. She attended classes and worked in the kitchen, shucking corn, snapping beans, shelling peas and serving employees' plates.

She once tried to run away to see her mother in Milledgeville, but a nurse's husband saw her and picked her up. It would be years before she saw her mother again.

After a few months at Gracewood, Jones said, officials took her without warning to the infirmary, telling her she would have to have surgery to tie her Fallopian tubes.

Although some other applications to the eugenics board from the time described patients as "oversexed" or having a "sexual perversion," Jones' file does not indicate that the surgery was justified because of any sexual activity.

The board approved the application on June 13, 1950. Because her mother was institutionalized and her father was dead, notification went to the solicitor general of Henry County.

Jones said she "wanted a baby bad," but she put up no argument.

"Down there you didn't have no says-so," she said. "You couldn't just go up and say 'I don't want to be sterilized.' In their mind, you need it."

Both brothers at Gracewood were also sterilized, she said.

* * * * * * *

Like several other states, Georgia has expressed regret over its involuntary sterlization policies.

An exhibit called "Deadly Medicine: Creating the Master Race," on display at the U.S. Centers for Disease Control and Prevention through August 10, explores the link between the eugenics movement that sterlized Jones and thousands of others in the United States - and the Holocaust that killed millions in Germany and Poland.

The exhibit, which draws on 40 archival sources from around the world, features original artifacts, photographs and Holocaust survivor testimony. On loan from the U.S. Holocaust Memorial Museum, it is co-sponsored by the William Breman Jewish Heritage Museum.

Friday, July 06, 2007

From the Wimington Journal, July 6, 2007



From 1929 to 1974, North Carolina saw the forced sterilization of young white
and Black poor women, some as young as 13 and 14, as the "self direction of
human evolution," according to a newspaper editorial cartoon of the time.

Incredibly, no less that the U.S. Supreme Court upheld Virginia's eugenics program in 1927. Researchers say that state deliberately used forced sterilizations to "preserve white racial purity.

What it was, in fact, was a state-sponsored attempt to control certain segments of the indigent populations, using mental illness, physical maladies, anti-social behavior, sexual promiscuity, or even homosexuality as the reason.

"Some people requested sterilization, but many of them were forced against their will," the 2004 NCDHHS Eugenics Study Committee Report noted. "In some cases, victims were children as young as 10 who had no knowledge or understanding of the procedure."

North Carolina's eugenics program is being chronicled and examined in an exhibit titled
"Why Me?" at the N.C. Museum of History
. The exhibit will then travel the state, starting in August.

Nial Cox Ramirez, 59, Elaine Riddick, 53, and Mary Frances English, in her early fifties, are three of the over 7,600 people subjected to the state-sponsored sterilizations, who shared their painful story with a museum audience during the exhibit's unveiling on June 19.

In Ramirez's words to the museum audience:

It's wrong to take away what God gave me because they through I was
feebleminded. I worked at the hospital for twelve years. How could I be

I took care of myself. I took care of my daughter. But they said I'm

Ramirez was one of the first to come forward publicly and tell how, in 1965, at the age of 17, the Washington Country Dept. of Welfare forced her to be sterlized the day after she had her first and only child. If she didn't, according to Ramirez, the social worker told her that her family would be kicked off welfare. In 1973m Ramirez tried to sue the state for what had been done to her, but the case was thrown out on a technicality.

A sterilization compensation bill which was filed in 2003, and would pay $50,000 in compensation to each verified eugenic survivor, remains stuck in the House Apprporiations Committee.

Whilst money will not make Rameriz, Riddick and English feel better, they say "we should be compensated for what we've been through."

Tuesday, July 03, 2007

Ruth over at WheelieCatholic has posted the following about disability community and perspective.

Where is the disability community?

Many people define community as a group of people sharing (or who shared) a common locale, neighborhood or area. Some say community refers to people with the same beliefs and values. Under these definitions, I am a member of many communities, including my town, my church, an alumna, etc.

But I also belong to the disability community, a community that is growing as there is increased awareness of the commonality of many of our experiences. This community also consists of our allies, something I've learned from my online affiliations. The disability community, in my opinion, fits into some conventional definitions of community yet also stretches those definitions in ways that may at first not seem important, but are.

The disability community, in part, is one that arises from the common experiences of living with a disability as well as those who, by choice or affiliation, become allies through experience. For example, yesterday I went out on my scooter wearing my T shirt that I got at the Ski for Light* trip. It reads "Blind People Do It in The Dark". As I went along at my top speed of 4mph, a few summer college students stopped me and asked where I got the T shirt, explaining that they were doing a project on disability. We got some coffee and talked about their project for about a half hour after I discovered from their questions that they really intended to do further research and just needed some context. (I must be a frustrated teacher because I do not like helping students when their research starts and ends with me.) I could sense that these students were potential allies.

We parted ways and I continued to scoot along. A woman with Down syndrome waiting for a bus stopped me and asked if my scooter was new because it was so red and shiny. I told her that it was brand new and she asked how it worked so I demonstrated that and she hugged me and wished me luck with it. I experienced that "click" I generally do when I'm around someone from the disability community and when a nearby person asked me "Do you know her?" I replied "yes." I do now.

I stopped near a park bench for a few minutes. An older man driving a Caddy who was parked at a meter got out of his car, sat on the bench and talked to me while he waited for his wife to come out of a nearby store. He explained that his daughter had MS and was having difficulty accepting that she needed a mobility device. I spoke to him for about fifteen minutes about that situation.

The answer to the question I pose above is that the disability community is all around us, locally and globally. Some days I wish we could take an aerial photo of everyone's town and chart the connectedness between people with disabilities, their allies, friends, families and loved ones. I think, even though some people still experience encountering someone with a disability as an uncomfortable and out of the ordinary experience, this would go a long way toward showing how that is more of a perception issue than a reality.

The truth is, however, that like any community, it often falls short to define it in geographic or spatial terms. In the case of the disability community I've found this to be particularly true and look forward to writing more about that.

*Ski for Light is an organization that offers adaptive skiing for both mobility and visually impaired participants.