NDY is back — and in a new home

announcement, Our News & Commentary Blog, update

I am happy to let readers know that Not Dead Yet is alive and well. Our hiatus wasn’t due to any major crises or problems – just the many minor ones associated with moving.

After eleven years based in the Chicago area, Not Dead Yet has moved its headquarters to Rochester, NY. Specifically, we’re now based in an office at the Center for Disability Rights – old friends and allies. CDR is one of the top disability activist/advocacy organizations in the country. That might seem strange – since Rochester boasts a population of slightly under 220,000 people.

But it fits with Rochester history:

Susan B. Anthony and Frederick Douglass both lived in Rochester – and are buried here.

More recently, Rochester was the home of Lucy Gwin, who founded Mouth Magazine, which is pretty much the only radical disability rights magazine still in publication.

This little conservative corner of NY has been the home of some real activism over the years — and organizations like CDR help to keep that tradition alive.

In the interest of full disclosure, I should add that – for what it’s worth – Rochester is the place I grew up and now that I’m back, it’s where I hope to spend the rest of my life.

Important – New Contact Info for NDY:

Not Dead Yet
497 State St.
Rochester, NY 14608-1642

Phone: 585-697-1640
Fax: 585-697-1641

More later….

–Stephen Drake

Delaware House Passes Nonbinding Resolution on Protecting People with Cognitive Disabilities from Medical Killing

bioethics, Our News & Commentary Blog, policy, politics

Some bloggers and activists alerted us to a resolution passed by the House in the state of Delaware on June 30th.

The resolution follows. After the text, I’ll explain why the wording may mislead people to make more of this resolution than it merits.

Here is the legislation:

HOUSE OF REPRESENTATIVES
144th GENERAL ASSEMBLY
HOUSE RESOLUTION NO. 75

ESTABLISHING PROTECTIONS FOR PERSONS WITH SEVERE BRAIN INJURY, IMPAIRED CONSCIOUSNESS, OR WHO ARE OTHEREWISE MENTALLY DISABLED.

WHEREAS, the Universal Declaration of Human Rights asserts that “everyone has the right to recognition as a person before the law” and that “all are equal before the law”; and
WHEREAS, the Americans with Disabilities Act clearly identifies the rights of the disabled to access essential needs and have essential services provided to them; and
WHEREAS, it is becoming increasingly apparent that persons who are suffering from severe brain injuries often have cognitive functions significantly beyond what medical science previously estimated; and
WHEREAS, it is also becoming increasingly apparent that the diagnosis of “persistent vegetative state” or “PVS” is a category that recent science shows is far more uncertain and overly broad than had been previously thought, including a high rate of misdiagnoses of PVS patients who have not been able to exhibit responses, but whose consciousness can now sometimes be measured with medical advances such as neuroimaging and drug treatment.

NOW THEREFORE:
BE IT RESOLVED by the House of Representatives of the 144th General Assembly of the State of Delaware that it is against the public policy of this State and this State’s interest in life, health and safety, for hydration and nutrition that is not harming a patient to be involuntarily removed from a non-terminal, apparently brain-incapacitated patient if doing so will cause the individual’s death. Furthermore, such withholding of hydration and nutrition without: 1) clear written direction from a legally competent patient or, 2) a valid written advance health-care directive that was previously executed by a patient who is now incapacitated and that either allows
such withholding under such circumstances or grants an agent authority to make that decision by an incapacitated patient is also against the public policy of the State of Delaware.
SYNOPSIS
This Resolution establishes protections for mentally disabled individuals in the State of Delaware. The impetus for this Resolution comes from the case of Lauren Richardson, a 24-year-old Delaware woman who, after suffering brain injuries and impaired consciousness, now faces the possible removal of her nutrition and hydration, despite the absence of her clearly specified and legal consent to any such a course of action. The State of Delaware has, through recent legislation prompted by the abuses at the Delaware Psychiatric Center, endeavored to protect the rights of
mentally disabled patients in the First State. Lauren, as a mentally disabled person, is enumerated those same protection and rights.

Warning: the title of this resolution is a lie. While the resolution states that it’s “establishing protections for persons with severe brain injury, impaired consciousness, or who are otherwise mentally disabled,” it doesn’t establish anything, at least not in terms of legislation or enforceable standards.

Here they are, with their definitions, taken from Delaware’s legislative website:

A resolution is the formal expression of the opinion, sentiment or will, of one or both Houses of the General Assembly. There are three types of resolutions:

SIMPLE RESOLUTIONS – A simple resolution is a motion of the house, and deals with the internal affairs of that house only. The effect of its passage does not go
beyond the bounds and the authority of that house.

CONCURRENT RESOLUTIONS – A concurrent resolution is used to accomplish the same purpose in relation to the entire legislature that a simple resolution accomplishes for either the House or Senate singly. A concurrent resolution adopted by the legislature does not become a statute, nor does it have the force and effect of law, nor can it be used for any purpose that requires the exercise of
legislative power.

JOINT RESOLUTIONS – A joint resolution is the most formal, and is addressed to matters that are not the internal affairs of either house individually, nor the internal affairs of the General Assembly as a whole. It is of no legal effect unless it
is passed by both Houses and signed by the Governor. A joint resolution is not a
law but is used to employ temporary measures and has the force of law while in
effect.

As you can see, the “simple resolution” is the weakest of the types of resolutions that can be passed in Delaware’s legislature. And no type of resolution has the “force or effect of law.”

I’m told that resolutions vastly outnumber actual bills in most state legislatures – since they don’t require any change in the law, expenditure of money, and other things that tend to drag debates out, they are vehicles to show their constituents they are trying very hard to look like they’re doing something.

But advocates in Delaware can have the last laugh on this. My hope is that this resolution, which reportedly passed unanimously in the House, can be used as an advocacy tool. It seems reasonable to challenge legislators who were willing to vote these powerful protections into a nonbinding resolution can be challenged to adapt this resolution — so these protections can be put into actual legislation — and making these symbolic protections as real as the force of law can make them. –Stephen Drake

AP Story on Washington State Assisted Suicide Battle

activism, assisted suicide, media coverage, Our News & Commentary Blog, Washington state

The newest Associated Press story on the battle for and against the proposed assisted suicide law in Washington State continues a promising trend that showed itself in California in coverage of that state’s battle over assisted suicide.

The newest trend is this: The diversity of the opposition to legalized assisted suicide is show, rather than having the opposition framed as solely from prolife and religious groups. In particular, disability activists are front and center.

Just to be clear – every coalition against assisted suicide has been a broad one. The coalitions have included religious groups, groups representing low-income workers, medical groups and disability activists/organizations. The reality is the same – it’s the coverage that seems to be changing.

Here’s an excerpt from the latest AP story about the battle in Washington State:

OLYMPIA, Wash. (AP) — There isn’t much John Peyton can do on his own except speak, and soon he’ll lose even that.

The former Boeing computer programmer has Lou Gehrig’s disease, which progressively paralyzes its victims. His doctor gives him three to six months to live.

He is using his last months to oppose a ballot initiative that would allow physicians in Washington state to help terminally ill patients end their lives. Only Oregon has such a law.

“What we’re really doing I believe, is attempting to eliminate the sufferer so we don’t have to deal with them,” Peyton said.

The last quote (followed by some general info on euthanasia worldwide) is from the leading spokesperson for the Washington State chapter of Not Dead Yet:

Critics, including many doctors and disability-rights advocates, say assisted suicide laws could exploit depressed or vulnerable people who worry they’ve become a burden on their families.

“This capitalizes on those fears people have about a disability, about people losing bodily control and function, that people would be better off dead than having to face that,” said Duane French, spokesman for Not Dead Yet, a disability advocacy group that’s part of the coalition against the measure.

Let’s hope this trend continues – it enhances our chances for adding Washington State to the list of states that have said “no” to legalization of assisted suicide.

For more information, check out the Washington Coalition Against Assisted Suicide.

Sad news – writer/speaker/lawyer/activist Harriet McBryde Johnson has passed away

activism, advocacy, goodbyes, media issues, Our News & Commentary Blog, Peter Singer, schiavo

This morning, several emails alerted us to the death of Harriet McBryde Johnson.

Harriet, whose voice, work and words touched people all over the world, passed away last night. Details are unknown – and to me, anyway – unimportant.

What is important is that Harriet lived a life devoted to the pursuit of social justice and became one of the most important voices to the nondisabled world from inside the disability rights movement.

We’re all still in shock, but Not Dead Yet president and founder Diane Coleman wrote the following to some friends today when she heard the news:

Dear friends,

I just learned through another email list that Harriet McBryde Johnson passed away last night.

This is a terrible shock. Harriet and I shared so much, spinal muscular atrophy, being attorneys (she with an active practice), work against euthanasia. She has been a sister in the struggle. Beyond perhaps all others in our movement, her writings have moved millions. This is such a severe loss.

Frankly, we’re all still pretty much at a loss for words. So I’ll share the words that others have written about Harriet and also direct you to some words written by Harriet herself.

About Harriet:

New Mobility “Person of the Year” (2004) Harriet McBryde Johnson: A Life Lived Well

Written by Harriet:

NY Times: Unspeakable Conversations

Slate: Not Dead at All: Why Congress was right to stick up for Terri Schiavo

Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon

First and short version of Harriet’s obituary in the Charleston Post and Courier:

Harriet McBryde Johnson, a well-known Charleston disability and civil rights attorney, died Wednesday.

“She worked yesterday. It’s a shock to everybody,” said friend and attorney Susan Dunn.

She was born July 8, 1957, and had been a Charleston resident since age 10.

She told The Post and Courier that she became an attorney because her disability-rights work had taught her something about the impact of law on how people live.

She specialized in helping people who couldn’t work get Social Security benefits.

She was chairwoman of the Charleston County Democratic Party executive committee (1988-2001); city party chair (1995-2000); secretary of city party (1989-95); national convention delegate (1996); president, Charleston County
Democratic Women (1989-91); County Council candidate (1994); and a certified
poll manager.

Funeral arrangements are pending at Fielding Home For Funerals.

Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to “the charity mentality” and “pity-based tactics” of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.

The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, “I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person.”

Read more in tomorrow’s edition of the Post and Courier.

Finally (for now, anyway), I owe Harriet thanks for my inclusion in the upcoming book, Peter Singer Under Fire: The Controversial Philosopher Faces His Critics. Her insistence on including the NDY critique was the reason we were included, since she made her own inclusion in the book contingent on a piece from us. –Stephen Drake

New “futile care” promotion includes attack on ADA

Americans with Disabilities Act, bioethics, futile care, lifeboat ethics, medical decisionmaking, Our News & Commentary Blog

I found an “interesting” article from the Kalamazoo Gazette, thanks to Bobby Schindler, who is doing some guest blogging for Wesley Smith while Wesley is on vacation. Bobby has his own valuable insights on the article, but I wanted to write about a couple of things that jumped right out at me.

The article is a profile of Dr. Kenneth Fisher, who has recently published a book that pushes – hard – for greater implementation of “futile care” decisions by strengthening the autonomy of medical professionals and undermining the self-determination of patients.

In case anyone thinks I’m overstating the case and its relevance to the disability community, here’s just one of Fisher’s “suggestions” to “improve” care by preventing “futile” medical interventions:

To revise the Patient Self-Determination Act and Americans with Disabilities Act so they ensure appropriate and beneficial medical care rather than provide patients the right to demand any level of care.

Got that? Fisher wants to go after the ADA specifically to weaken or eliminate our legal rights to direct our own care and determine what we think is appropriate.

Fisher is someone we should all probably keep an eye on. He has a blog – there’s a link provided in the article.

The blog provides a form for download that replaces traditional advance directives. For one thing, it invites individuals to cede their rights to an “appropriate care committee.”

Excerpt of text from his new and improved admissions form:

A patient has the right to evidence based care tailored to the individual, but cannot receive care that has no value. The physician team is responsible for defining beneficial care, where the benefit to the patient significantly exceeds the risks. A committee (the appropriate care committee) is available within the hospital should conflict arise. The committee will render judgment within one working day.

Fisher’s also not shy when it comes to self-promotion. The sample fax he provides so that you can email your congressional reps comes complete with a glowing recommendation from you – urging the congressional rep to read his book.

So for those of us who have been concerned with the rising juggernaut of “futile care” policies, here’s a new reason for concern. We have a new promoter who clearly has the ADA in his sights.