Katrina again – Black Agenda Report on “Euthanasia” Charges and Racism

Katrina, medical killings, Our News & Commentary Blog, racism

A lot of things called themselves to my attention during my daily news search today, but one particular item demanded attention.

In spite of what you may have heard, not everyone (besides us) is thrilled with the failure to bring charges against anyone in relation to the alleged murders of patients in the days after Hurricane Katrina.

Black Agenda Report (BAR) has published and aired a scathing indictment of the district attorney and the grand jury for failing to “value the lives” of the victims enough to do anything more than just brush them off as an unfortunate accident.

BAR executive editor Glen Ford describes both the killings and the lack of concern on the part of the justice system as part of a larger pattern of institutional racism that played out in New Orleans in a deadly way for many people:

It’s easy to kill a Black person in New Orleans. Or a thousand. If you are a doctor, you can kill nine of your patients, and get away free. Doctors at a New Orleans hospital were absolved of all charges, when they willfully killed nine people, injecting them with lethal doses of drugs. The doctors were white, and they killed people who were mostly Black. So they got away with murder. In the New Orleans Medical Center crisis, we can see the real crisis in American society – that Black life is not held in as high a value as white life. Murder results.

Read the rest of Murder in New Orleans: No Big Thing on the Big Easy.

As readers of this blog know, the AMA has already announced plans to draft model legislation to make sure that future suspected murders by doctors in disaster areas don’t even get investigated. This will give them set them apart from the rule of law in ways that don’t apply to police or even to soldiers on the battlefield.

On a final note, we (at NDY) are grateful to Ford for speaking out on the racist aspects of the handling of the Katrina cases. We can’t help but wonder, though, if being both Black and disabled (as the Katrina hospital victims were) or both Latino and disabled (as Ruben Navarro was) increase the chances of deadly discrimination within the medical system. –Stephen Drake

Another blog you should read today

blog recommendations, homicide, media issues, Our News & Commentary Blog

One of the nice things about a blog is that it gives us the opportunity to tell visitors to go read some things that other activists are writing about NDY-related topics.

So today, we want to point you to the latest two entries by Cilla Sluga, whose work has been referenced, linked and praised here before.

Letting Go: They Loved Him to Death is an analysis of a major piece that appeared in the Denver Post last year. In detail, it chronicled the decision and the process involved in ending the life of a disabled 4-year-old through removal of his feeding tube.

Here’s an excerpt from her entry on the Denver Post article:

Andy Cross, a Denver Post reporter wrote, Letting Go. It appeared in the October 28, 2006 edition. For his work, Cross received a runner-up journalist award for documenting what it is like to “slowly lose a child.”

The term slowly is accurate; it took 23 days for Dylan to die because of starvation and dehydration; “lose a child” is not at all accurate.

He did not run away at the mall. No one kidnapped him at night. He spent all 23 days in his mother’s apartment, with his parents, and a reporter documenting the entire
ordeal. Dylan’s parents, Kerri Bruning and Dave Walborn perceived his bad days
outnumbered the good and made the decision to withdraw food.

Ministers, grandparents and others came to the apartment throughout those 23 days without food. The article describes visitors coming ‘in waves”. Dylan’s grandma even threw a little party in his honor, the day before they withdrew food.

Today, Cilla has a new entry giving an update on Criste Reimer, who was allegedly pushed to her death off a fourth floor balcony by her husband. The article she found is a little dated, but has some new details from from family members.

So go read Criste Reimer Update while you’re on her blog.

What Happens When Someone Wants Life-Saving Treatment, But Their Guardian Disagrees?

bioethics, Our News & Commentary Blog, Surrogate Decisions & Guardianship

Last summer, we received news about a local guardianship case. It’s the kind of case that deserves greater attention than it got at the time. This particular case was handled by Equip for Equality (EFE), the Illinois organization that is part of the national, congressionally-mandated Protection & Advocacy Network.

This is an important case – it shows us just how badly the power of a guardian can be abused and what it takes to get that guardian’s decision overturned.

Darrell, a man with mental illness living in a nursing home, was experiencing liver failure as a result of his long-term use of psychotropic medications. To maintain his health, he needed dialysis three times a week at the local hospital. When it was discovered that he also had late-stage cancer, his father, who was Darrell’s guardian but rarely visited his son, decided to terminate the dialysis and let his son die. Darrell, however, was aware of his situation and asked to continue treatment. A social worker acquainted with the case contacted Equip for Equality to seek help in protecting Darrell’s right for continued dialysis. She told Equip for Equality that Darrell would die quickly if he lost his treatment and action needed to be taken promptly.

Equip for Equality spoke to Darrell, who specifically requested dialysis and indicated why he needed and wanted it. Within a day, Equip for Equality prepared a Petition for Temporary Restraining Order (TRO) and affidavits, and arranged for witnesses to be present for the hearing. The next day, the court entered a TRO requiring the guardian to comply with Darrell’s wishes and allow the dialysis.

The hospital, however, was reluctant to abide by the order because the attorney believed that the hospital, which was located in Indiana, was outside the jurisdiction of the Illinois court. Equip for Equality persuaded the attorney that the hospital was indeed bound by the order under the Full Faith and Credit Clause of the U.S. Constitution, and the hospital soon relented to the order and administered the dialysis.

Darrell lived for nine more days. His mother, who had maintained close contact with her son for decades, related to Equip for Equality that Darrell’s last days were spent with her and his siblings and that the extra days obtained through Equip for Equality’s efforts brought the family precious time, peace and closure. (Copyright © 2001–2007 Equip for Equality. All Rights Reserved.)

The successful intervention in the case of Darrell is no cause for comfort, since it raises troubling questions. What would have happened to Darrell without the call from the social worker? What would have happened if no one at EFE was available to take the case on short notice? How many people under guardianship have had similar decisions made for them, but had no one to plead for legal advocacy on their behalf? (We don’t assume that all social workers would respond in the way that the one in Darrell’s facility did) How was a guardian even able to order stopping a life-saving measure for an individual who clearly stated that he wanted it?

We don’t have the answers to these questions, but we had concerns about these issues several years ago. During the Robert Wendland case, changes in the California probate code had broadened the powers of conservators. The statutory change was the basis for the argument put forth by Robert Wendland’s wife in her efforts to get his feeding tube removed in the absence of either an advance directive or a durable power of attorney. Wendland was what is now labelled as a “minimally conscious state.”

The California Supreme Court, which denied the petition for removal of Wendland’s feeding tube, expressed concern over the statute changes:

While section 2355 is written with sufficient breadth to cover all health care decisions, the Legislature cannot have intended to authorize every conceivable application without meaningful judicial review. Taken to its literal extremes, the statute would permit a conservator to withdraw health care necessary to life from any conservatee who had been adjudicated incompetent to make health care decisions, regardless of the degree of mental and physical impairment, and on no greater showing than that the conservator in good faith considered treatment not to be in the conservatee’s best interest. The result would be to permit a conservator freely to end a conservatee’s life based on the conservator’s subjective assessment, albeit “in good faith [and]based on medical advice” (§ 2355, subd. (a)), that the conservatee enjoys an unacceptable quality of life. We find no reason to believe the Legislature intended section 2355 to confer power so unlimited and no authority for such a result in any judicial decision. Under these circumstances, we may properly construe the statute to require proof by clear and convincing evidence to avoid grave injury to the fundamental rights of conscious but incompetent conservatees. (p.45)

Rose Wendland’s petition, based on the broad interpretation of the statute changes, was supported by 43 bioethicists. Evidently, they thought the expansion of the powers of conservators was a good thing.

It’s probable that there are similar problems in many states. The statutory changes in California occurred as the result of advocacy on the part of well-funded groups who targeted these laws — and kept disability organizations away from the table when they did so. We fear that Darrell’s case may be the tip of a very large iceberg – and the stories hiding beneath the surface don’t have many happy endings.

Jerry Lewis’ Unforgivable Harm to Young People

media issues, Our News & Commentary Blog, pity, telethon

(Editor’s note: We are participating in the “blog against the telethon,” organized by Miss Crip Chick and Kara Sheridan. For a comprehensive list of links to others blogging against the telethon, please check out Kara Sheridan’s site – she’ll be adding links as the notifications come into her. While you’re at it, you can also check out the Washington Post website and read Ben Mattlin’s No Longer One of ‘Jerry’s Kids.’ The entry below is written by Diane Coleman, founder and president of Not Dead Yet.)

When Mike Ervin co-founded Jerry’s Orphans in 1991, I was living in the country outside Nashville, and organized local disability activists to picket the TV station that carried the Telethon. Protest is viewed as especially impolite in southern communities, but I always felt that preventing the Telethon from harming young people with disabilities should trump other arguments and discomforts. Thank you to the many disability rights leaders who have written so persuasively about the harms caused by the Telethon’s message of pity.

One form of Telethon-related harm that many of us with neuromuscular disabilities have experienced is the incorrect prediction of an early death, along with the failure to mention a wide array of options for breathing support to extend life. My friends who use bipap machines at night due to post polio syndrome taught me about my options. But I’ve lost at least two younger friends to respiratory crises who never pursued breathing support. One said she feared it would be burdensome.

Even with breathing support, some children with neuromuscular disabilities will die young, and that’s tragic. It’s difficult to fault Jerry Lewis for mentioning that during the Telethon, even though I thought he should also say something positive about breathing supports.

But during the 2001 Telethon, Lewis crossed a line in a way that continues to shock and anger me. He told the story of a 15-year-old with muscular dystrophy who was on a vent. Lewis was contacted because the young man said he wanted to go off the vent and die. Lewis reported to the Telethon audience that when he telephoned this young man, he apologized to Lewis for not beating the “disease.” He’d told his parents that he was sorry for having brought them down and being a burden. He took himself off the vent (which could not have been done without the permission of his parents). This, said Lewis, is why we have to beat this disease. Lewis said not a word about assuring him that he was not a burden, or arguing that this was a bad reason to decide to die, or suggesting that he wait-and-see, not even to wait for the cure the Telethon has been promising all these years.

Lewis gave no sign that he fought for the life of this 15-year-old young man during that phone call. By the time of the 2001 Telethon, he had already died. The worst part of Lewis’ account is that he was then speaking to all the other young people watching the Telethon – from nondisabled fundraising scout troops to teens with neuromuscular disabilities on ventilators. And what they heard was that Lewis did not express one word of disagreement that this young man was a burden to his parents, nor did Lewis disagree with his decision to die for their sake. His silence on these issues was a profound abandonment of those who look upon him with trust. It is an unforgivable harm. –Diane Coleman

Action Alert: September 3rd is “Blog Against the Telethon Day”

action alert, Our News & Commentary Blog, protests, stereotypes, telethon

(Thanks to Mike Reynolds for the “heads up” on this)

From Miss Crip Chick (“just your everyday southern, queer disabled woman of color):

Jerry Lewis is the host of the Muscular Dystrophy Association’s Annual Telethon, a telethon that occurs every Labor Day to raise funds for cures by using disabled people as posterchildren. Disabled people protest the telethon because of its outdated, negative portrayal of disabilities. These images that the telethon promotes sticks in people’s minds and continually serve as a barrier for disabled people. Disability is not the problem, but rather the attitudes and barriers that society places on us.

What can we do? Protest. Write a Letter to the Editor. Tell people about the charity, medical, and social model of disability. Blog. Kara and I, along with the Disability Activist Collective (website coming soon) are organizing a campaign against the telethon and the charity model of disability. We need bloggers (not only disability bloggers but all! feminist, queer, woc, environmentalist, activists, great time to build alliances) who will agree to write about this! The campaign will work much like a blog carnival and will be heavily publicized in listservs and other sources of media. We encourage you to participate! To participate, please a comment or email us at consciouslycrip@gmail.com. We will be announcing the campaign on Thursday via media and will tell them to check the website postings on Monday. The campaign will be posted on Kara’s site.

I’m not sure if I’ll be blogging or not on the 3rd. I do my blogging from my office and I am not sure if I’ll be here then. But we support this effort. NDY founder Diane Coleman joined Jerry’s Orphans and started organizing local telethon protests when the group first formed in 1991.

A lot of visitors to this site are from outside the disability community and probably don’t have any idea why a group like Not Dead Yet would care about the telethon.

It’s a complex issue, but here it is as succinctly as I can put it:

There are powerful cultural stereotypes that promote the widespread belief that tragedy, grief, and suffering are inevitable aspects of disability; furthermore, those same stereotypes suggest that those emotions put the blame for those feelings on the disability itself, rather than any social factors such as segregation, isolation, or impoverishment. Thus, according to people who believe those stereotypes, the only “relief” a person with a disability can hope for is a “cure.”

The annual ritual of the telethon is a strong perpetuator of these stereotypes. And there’s a very real cost to the enduring nature of these stereotypes.

That’s where the connection between the “Blog Against the Telethon Day” and NDY come in. When disabled women are killed by their husbands or boyfriends, the public often jumps to the conclusion that she “asked for it” or that it was an act of kindness – rather than viewing as the act of violence it really was. You can read more about that dynamic in “Criste Reimer’s Death Not About Health Care Debt or Compassion.” It’s one reason that public (and press) responds with sympathy rather than outrage when a parent kills a child who has a disability.

And, of course, it impacts the public – which mostly supports the idea that suicide is an irrational act. An alarming portion of the public will set that assumption aside when a disabled person wants to kill him or herself. Then it tends to be seen as very rational – and even encouraged in some cases. The telethon helps to maintain this destructive mindset in public attitudes.

If you want graphic examples of just how the telethon and Jerry Lewis have pitched “pity” as the the appropriate response to people with disabilities, please visit Miss Crip Chick’s blog. She has shared some examples and links to a number of sites with still more.