Apologies and Explanations – Back Online Next Week

October 31, 2007Our News & Commentary BlogStephen Drake

Dear Readers,

This blog gets a lot of visits, and probably part of the reason is that people have come to expect frequent postings here. That has fallen off over the past couple of weeks.

I wanted to post now to give a partial explanation for the hiatus and give reassurance that this blog will be back to its customary volume next week.

Over the past two weeks, both Diane and I have dealt with previously scheduled events that took us away from online NDY matters. Diane is at the INCIL Retreat today.

In addition, I committed to do a presentation at the Fall Conference of the Nonverbal Learning Disorders Association. I’m leaving tomorrow and won’t be back until Saturday night. Here’s the blurb for my session, taken from the list of presenters on the NLDA site:

STEPHEN DRAKE,
Research Analyst, Policy Analyst and Organizer

Presentation:
“No one told me I shouldn’t be able to do this.”

Stephen Drake is a researcher, policy analyst and organizer. He’ll share his journey of awareness and development of successful strategies — a journey in which his struggles with “deficits” have turned out to be as important in helping him in his work as his strengths.

Stephen made his own self-diagnosis as a grad student in Special Education. Since 1998, he’s worked as a disability activist, engaged in public debate, organizing protests, analyzing public policy and other duties related to his position as a research analyst for a national disability rights group. He’s found that his obvious strengths help him immensely on the job, but so do some areas that started out “deficits” common in folks with NLD.

Stephen will share some of his journey, his own self-evolved coping strategies, and some of his own interpretation of what some of the “core” issues are in terms of NLD in his own life, which are a little different than what is reflected in NLD literature.

I might write more on this later, but I won’t be talking – much – about NDY stuff, except how my neurological issues affect my work – in mostly positive ways.

To my fellow disability activists – I solemnly swear not to get all inspiration and avoid the use of the word “overcoming” at all costs.

In addition to the above, Diane and I were both attending to family issues – one of those inevitable serious health crises. Fortunately, while things were serious, things seem to be going well for the loved one who just had the triple bypass.

Barring unforeseen circumstances, this blog will be back to what passes for normal around here by Monday next week. –Stephen Drake

George Exoo Free – Extradition Request Denied

October 26, 2007assisted suicide, crime and punishment, george exoo, Our News & Commentary BlogStephen Drake

George Exoo, who fashioned his own form of “suicide tourism,” is a free man today. Irish authorities wanted to arrest and try Exoo on charges related to his role in the death of Rosemary Toole. NDY has been following Exoo’s case for quite awhile, as evidenced by this 2002 press release. It’s been a long watch, since Exoo wasn’t actually arrested until this summer, with an extradition hearing held in August. Those wanting more details on Exoo can also read our prior post from August, which describes the way in which he used his “compassionate” activities to finance his travels.

Because we’ve spoken out on the case, the Associated Press contacted us for the story it published today. The judge is quoted in one part of the story:

“While Mr. Exoo’s conduct may be viewed as wrong, and very highly improper by most if not all of us, it is generally not recognized as criminal here in the United States.”

That specific quote elicited the following from me:

Steven (sic) Drake, a spokesman for Not Dead Yet, a national group that opposes assisted suicide and euthanasia, said VanDervort’s comment on assisted suicide laws in the United States was overreaching.

“That’s awfully broad. There is certainly enough instances of people being prosecuted in various states,” Drake said.

“I think there are people in Ireland who would have wanted to see this played out in court,” he said. “But, on the other hand, it looks like the government gave it its best case.”

OK, they forgot to mention we’re a disability rights group, but the reporter I talked to wasn’t the one at that bureau who was familiar with us. My quotes are accurate.

I’m not a lawyer and don’t pretend to be anything close to an expert on laws governing extradition treaties. I do know that the government went to great lengths to document the number of states that criminalize suicide assistance through statute and common law. While that may not have been sufficient in terms of the extradition treaty (again, not a lawyer), it surely was enough to render the judge’s quote a rather incredible overstatement of where suicide “assistance” stands in regard to the law.

And, as I told the reporter, we’re disappointed here, but it looks like the court handled this seriously and thoroughly. And we respect the judicial process here – to a point. NDY is based in Illinois, which had an alarming number of innocent people on death row after the judicial system here dotted all its i’s and crossed all its t’s. So our respect is tempered by our sense of reality.

In the meantime, we’re wondering if Exoo will pick up with his old “Compassionate Chaplaincy” and European travel plan. We’ve got just the poster for him:

The image above is a poster with the title “Join Reverend Exoo and the Compassionate Chaplaincy.” Below that is a drawn caricature of Exoo. Underneath the caricature are the words: “travel to exotic, distant lands; meet exciting, unusual people and help them kill themselves – all travel, lodging and recreational expenses reimbursed – cash up front.”
That’s all for now. More soon. –Stephen Drake

NY Times Blog: “When Doctors Steal Hope” (and more)

October 25, 2007media coverage, Our News & Commentary Blog, professional accountabilityStephen Drake

I’m back in the office for at least today. Comments are caught up on the blog.

Catching up with email, an item from Monday, October 22nd caught my eye. It’s from the NY Times Health Blog. Columnist Tara Parker-Pope lays out a scenario that will be familiar to readers of this blog in “When Doctors Steal Hope“:

A 79-year-old woman I know suffered a stroke recently, and a doctor in the emergency room told her family there was nothing he could do. The family was devastated. The woman’s 24-year-old granddaughter ran to the parking lot and vomited, then spent the rest of the night at home with the family, sobbing with grief.

But the next day family members returned to the hospital room to see the woman sitting up, drinking a milkshake. The nurses even had her out of bed and walking to regain her strength. She clearly has a long recovery ahead of her, but three days after the doctor’s first grim prognosis she left the hospital for a rehabilitation facility. The family was whipsawed by the emotional events. Why, they wondered, hadn’t the doctor told them a recovery was even remotely possible?

The rest of the blog entry contains a discussion of the possible motivations of physicians in this type of scenario, which is treated as all-too-common. As part of her exploration, Parker-Pope solicits the input and expertise of Dr. Jerome Groopman, the author of several books, including “How Doctors Think.” Groopman was the author of the New Yorker article discussed on this blog recently. Here’s what Groopman had to say to Parker-Pope:

Dr. Groopman says he is troubled by stories like the one involving my friend, but he’s not entirely surprised, either. In the case of stroke, for instance, treatments are inexact and recovery largely depends on the body’s own ability to heal itself. “When the physician feels that he or she really can’t do anything active, they tend to take the most negative scenario as the likely one,’’ said Dr. Groopman.

And well-meaning doctors often see less harm in having been wrong when a person recovers than wrongly predicting a recovery that doesn’t happen, he explained. “In some ways it’s easier to give people the worst news, and then if something good comes about everyone is overjoyed,’’ he said.

Both Parker-Pope and Groopman are missing – or avoiding – another aspect of this behavior. When these individuals with stroke, brain injury, etc. are described as “hopeless” the next step is often a discussion of the removal of the ventilator or feeding tube that is being used in those first days and weeks post injury or illness. By avoiding this aspect, Groopman and Parker-Pope are avoiding the issue of the life-and-death consequences of these “rush to judgments,” as Diane Coleman recently called them.

And by avoiding that issue, Groopman is missing another possible motivation. At least some doctors might be motivated to nudge families toward removal of life-sustaining treatment, figuring the death of the individual is a better outcome than the stress the family would experience with the long rehabilitation and level of disability that their loved one may very well face. Referring once again to Diane Coleman’s blog entry on the topic, at least a couple of bioethicists have suggested that as a legitimate course of action for doctors.

The New Yorker article and this recent blog entry by Parker-Pope are welcome entries into new territory regarding the uncertainties facing people with neurological injuries. Let’s see if someone out there in the mainstream press can carry this discussion the rest of the way home. –Stephen Drake

Hastings Ctr Report: Article Claims Ashley X “Sacrificed for the disability rights agenda”

October 19, 2007bioethics, Our News & Commentary Blog, reality checkStephen Drake

This particular entry is difficult to write, since I’ll be referring to an article that is generally unavailable to the public. But it’s important enough to take a crack at it. I suspect that a number of readers of this blog will find a way to get the article one way or another. (smile)

For awhile now, the Hastings Center has been making a quiet outreach to the disability community. A few players from the Center are involved in an event that will take me away from my computer over the weekend. I’m dubious about the value of the event. Part of that is based on past experience. I’ve been involved in two such events before, involving “dialog” between bioethicists and disability advocates. Both were dead ends – no followup or follow-through. And some of the same people in this event were involved in those events.

Anyway, at the same time I’m preparing to have a polite exchange of ideas (or something like that) with some bioethicists, a colleague alerted me to a particularly nasty attack on the “disability rights agenda” published in the current issue of the Hastings Center Report. It makes me wonder if the author was inspired by social conservatives’ attack on the “Homosexual Agenda.” It certainly reads like it could be. (note: in my circles, that “agenda” is generally referred to as “gay rights” or simply “human rights.”)

The article in question, “Disability and Slippery Slopes” is the “perspective” piece in the current (Sep/Oct 2007) issue of the Hastings Center Report. I can’t share much of it or link to it. The journal editors have wisely left this piece unavailable as an online offering to the general public.

Anita J. Tarzian, the author of the piece, does some “interesting” things in the course of her essay. Focussing on the “Ashley X” debate, she challenges the question of the surgical alterations to the young girl in question as a “disability rights” issue. She selectively defines “disability rights” issues through the social model often applied to people with physical disabilities. She also refers to the Illinois People First website and makes the claim that the statements made about what people with disabilities need and want exclude people with the assumed intellectual impairments of “Ashley X.”

She pretty much suggests that the “Ashley X’s” of the world should be culled from the “disability herd.” It’s the old – “you can’t speak for them because they’re too disabled to be disabled” gambit. Guess she should tell organizations like The Arc and TASH that they’re wasting their time.

Never in this article does she actually quote actual activists in regard to “Ashley X” – she instead quotes a pediatrician from an excellent Salon article on the issue, although she disregards the questions raised about the ethics committee process in the same article.

Incredibly, she quotes Nancy Mairs, a writer and disability rights advocate to make a point:

People who act on principle are likely to sacrifice the individual for the agenda, which is frequently shaped by their own, often deeply buried, presuppositions about what constitutes an acceptable life.

Tarzian left out some important context. Mairs was referring to Jack Kevorkian in that quote – a person willing to sacrifice individuals to his agenda. It’s part of an even broader discussion about the interplay between personal beliefs about choice and the consequences of certain types of public policy – and how they can come into conflict.

Tarzian follows up the Mairs quote by saying that objecting to the ‘Ashley Treatment’ “sacrifices Ashley for the disability rights agenda.”

Say what? How was Ashley “sacrificed”? By the time anyone knew about this, she’d had the surgeries. If, like Tarzian, you thought the surgical alterations were ethical and acceptable, there is no reason to whine here. Is Tarzian complaining because Washington Protection & Advocacy had the bad manners to investigate and announce the hospital had broken the law?

Finally, Tarzian calls for “an informed and nuanced public debate about disability, quality of life, and health care resource allocation.” The implication, of course, is that somehow the “disability agenda” interfered with that.

Let’s get real. The public discussion was dominated by members of the ethics committee who sanctioned these surgeries, transhumanists (unidentified as such) talking about the esthetics of matching “mental age” to body size, and a host of ethicists supporting the so-called “Ashley Treatment.” Art Caplan stood out as the one ethicist with real time allotted in the media who criticized the procedures and the ethics committee.

Tarzian got one thing right. There wasn’t anything resembling an informed or nuanced debate in public about the so-called “Ashley treatment.” But disability rights advocates were barely present in the public discussion. Lay the blame where it belongs – at the feet of the ethics committee members, transhumanists and other talking heads who tried to make the issue as simple as possible for public consumption.

This also doesn’t exactly enhance my expectations for the upcoming meeting. This article is far below the standards one usually expects from the Hastings Center Report, even in the “perspectives” section. Disability rights activists and advocates can deal with criticism – but it’s reasonable to expect criticisms to be fairly constructed, based in reality, or at least rational. Tarzian’s article is none of those. –Stephen Drake

Sunday, Oct. 21 – Addendum: Wesley Smith has more to say about Tarzian’s article. Read it here.

There won’t be any posts on the blog for a few days due to a combination of professional and personal obligations. I’ll be on the road for the next couple of days. Look for new entries by (hopefully) Thursday, October 25th. I also beg the patience of those who post comments as they wait a few days for them to appear.