As with other link farms, feel free to add your own or whatever.
- A Canadian Dimension review of two books about mothers of children with disabilities notes the emphasis on activism and politics rather than just personal experiences. The books are Battle Cries: Justice for Kids with Special Needs by Miriam Edelson and Becoming Citizens: Family Life and the Politics of Disability by Susan Scwartzenberg.
- Michael Bérubé shares a Chicago Tribune article where Jerry Lewis compares MDA Telethon protestors to those delightful poster children of Islam — Hezbollah.
- Nat Hentoff of The Washington Times looks back at the Schiavo case as Michael Schiavo becomes a Democratic shill for the right to die.
- Vicki at Speak Softly writes a letter to a Nameless and Shameless Physical Therapist for, well, being a professional asshat. Meanwhile, Sarahlynn at Yeah, But Houdini Didn’t Have These Hips evaluates the system that declares her precocious Ellie to be “severely delayed in cognition.” She finds, well, asshattery.
- The photojournalists’ blog WarShooter features captivating pictures of “Disability in Cambodia,” though the repeated use of “suffers from-” should be ignored, if possible, unless the condition following that phrase is replaced by “abject poverty.”
- The current issue of Clamor magazine features a report on “The New Wartime Body” where Dennis Clarke, a doctor specializing in lower-extremity amputees and getting them prosthetics, says:
“The prosthetic industry is moving forward because of war…. War is the single driver of technology in our profession. The net effect of these young and vibrant amputees is that they are pressing forward and doing well; that makes us look good. Technology does not lead change. Need leads change, and war is good for business because it necessitates need. One could argue that as earnest an anti-war statement could be made regarding the same issues.”
- ComicFoundry features a two–part analysis by Franny Howe entitled “Dissing Abilities: The Contradiction of Disabled Superheroes.” It’s on the strange hero-worship of animated freakery.
Crossposted at The Gimp Parade
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Honestly, how dare you suggest that there’s any medical controversy over Terri Schiavo’s medical condition and diagnosis of a PVS. The neurologic community is unanimous in declaring the one doctor who said she wasn’t PVS (Dr. Hammesfahr) to be a fraud. In fact, the medical school that graduated that doctor (Northwestern), a highly reputable medical school, has seen fit to make a public declaration distancing themselves from him. I urge you to go to http://www.abstractappeal.com to find the most balanced and fair presentation of the case, and the legal issues surrounding the case.
That there has been medical controversy over Terri Schiavo’s condition is hardly something I need to suggest since it’s something everyone knows — though I actually say nothing of the kind above. I simply link to one of the few mainstream journalists who covered the case with an eye toward how it relates to disability rights. I’ve been to Abstract Appeal, it’s a good site for what it covers.
I am not sure of Amazing Aunty’s specific objection to your Schiavo reference. All I know is that it brought me up short, too, and that I find it objectionable.
First: The Washington Times. This is not a source I can automatically consider reliable. Second: “a Democratic shill” – this is perjorative on its face, plus being possible misleading as to the topic’s partisan affiliation. Third: “right to die” signifies to me a somewhat different scenario than the Schiavo situation portrayed. “Right to die”, to me, refers to a “right” being asserted by the person whose death is anticipated. This was hardly Terri Schiavo’s situation.
I am offering you my initial reaction to your brief mention of the Schiavo case, to the words you used. I will now follow the link to the Hentoff piece. I do not know how it will affect my opinion about the Schiavo case or disability rights. This comment relates only to your citation.
I’ll say this for Jerry Lewis – every time I think he’s reached the absolute limit for how horrible he is, he tops himself.
The article by Franny Howe on disabled superheroes is plenty interesting — I wish she’d also examined disabled supervillains. Seems that it would have been just as enlightening.
It’s simply not true (and rather obviously implausible) that only one doctor ever said Terri Schiavo was not persistently vegetative. It’s true that only one neurologist (joined by a radiologist) testified to this at the original trial, but the three other neurologists who gave testimony were selected either by Michael Schiavo or, in a single case, by the judge.
I was unaware that the Northwestern University medical school had issued a statement distancing themselves from the neurologist in question. I have only read that the chairman of the neurology department has claimed that it was under consideration. Can you provide a reference for your statement?
As I wrote last year, of the nine board-certified neurologists who had given Terri a neurological examination, eight determined that she is in a persistent or permanent vegetative state (PVS).
Only one – Dr. William Hammesfahr – has said otherwise. Regardless of his status with Northwestern U, Dr. Hammesfahr appears to be something of a con man. For example, he frequently claims to be a nominee for the “Nobel Peace Prize in Medicine,” a claim that’s simply not true. He has repeatedly claimed that he has cured patients with conditions similar to Terri Schiavo’s – but he was unable to name a single such patient when put under oath. In 2003, the Florida Board of Medicine found that he had charged a patient for providing medical services he hadn’t actually provided, and fined him over $50,000 (mostly in administrative costs). Although he says he can perform cures other neurologists would find miraculous, he has never published evidence of his amazing results in a peer-reviewed journal – although he does talk about them in a faux-journal he publishes and edits himself. (His theories have earned Dr. Hammesfahr his own entry on quackwatch.org). Nor has he ever explained how it is that a MRI, multiple CAT scans, and multiple EEGs of Terri’s brain can all be so mistaken.
This is not the record of a doctor whose opinion should be taken above the opinion of eight of his peers. This is the record of a quack. And aside from Dr. Hammesfahr, every doctor who has personally given Terri a neurological examination has found that she’s in a PVS.
Or in any other context, unless you count neurologists who never examined Terri Schiavo.
First of all, why is being selected by the judge apparently a reason to discount a doctor’s testimony?
Here’s how Terri Schiavo’s Guardian ad Litem – who had no reason for being biased in favor of Michael – summarized the medical testimony:
All reasonable evidence indicates that Schiavo was in a PVS – indeed, not one person on the “maybe she wasn’t in a PVS” side has given a credible explanation for how someone with no cerebral cortex could be conscious. There is a controversy about this question, but it’s similar to the controversy over evolution vs. creationism, or over if global warming is taking place; the controversy is being driven mainly by politics, not by good-faith disagreement between legitimate and knowledgeable scientists.
It’s unfortunate that so little of the discussion here has focused directly on the issues disabled rights activists were focusing on during the Schiavo controversy. I think this is the fault of the Hentoff article – which, despite the lip service to viewing Terri’s case as a disability rights issue, really presented the standard pro-life view of the Schiavo controversy. And at least one position Hentoff took – his implication that whether or not someone can breath without assistance is a relevant moral issue – seems to me incompatible with a disabled rights perspective.
Contrast Hentoff’s piece to this essay in Ragged Edge magazine. As that article shows, the disabled rights response to the Schiavo controversy is much more compelling than the pro-life response was, and much more of a challenge to the “right to die” position. But I don’t think anyone who wasn’t already very well schooled in the disabled rights perspective, would be able to see it in Hentoff’s article.
How can this be the fault of the Hentoff article? Whatever the faults or merits of that article, the discussion here started with an assertion that there was total unanimity among respectable physicians about Terri Schiavo’s condition. If one concedes this point, how much room is there for disability rights issues in this case?
I questioned the claim of medical unanimity in a previous post precisely because it seems designed to effectively invalidate all other considerations that might arise if any ambiguity or uncertainty as to the nature of Terri Schiavo’s condition were admitted.
This, presumably, is why the head of the American Association of People with Disabilities (quoted in the sidebar to the Ragged Edge magazine essay) wanted more doctors to be given access to Schiavo. Of the neurologists who concluded that Schiavo was persistently vegetative, how many were selected by Michael Schiavo?
Terri Schiavo may well have been a PVS case — I don’t claim to argue that she wasn’t — but there’s something unsettling about the way in which the PVS diagnosis is vehemently asserted as a way of brushing all possible moral considerations aside. Of course, this is exactly what will happen if society ever turns to euthanasia as a widespread practice: the first step will be to proclaim a consensus of medical professionals in order to banish doubt and render ethical considerations irrelevant.
I assume Amazing Aunty was galvanized into writing her comment by this statement of Hentoff’s:
The idea that “several” neurologists who had examined Schiavo said she wan’t in a persistent vegetative state is just a lie, and inexcusable in someone who has covered this case as much as Hentoff has.
There’s lots of room. For example, read Harriet McBryde Johnson’s article in Slate, which made many arguments that can still hold water “If we assume [Terri Schiavo] is unaware and unconscious.”
I think this assumes too much. It’s clear to me that there are real considerations remaining even if we come to a consensus on the question of if Terri Schiavo was capable of thought or consciousness. Again, I recommend reading Johnson’s Slate article, and rereading the Ragged Edge article. It’s simply not true that all those considerations disappear just because Terri was, beyond any reasonable doubt, in a PVS.
The majority of the neurologists who didn’t testify at trial were selected during the years when Michael and the Schindlers were getting along well and collaborating in Terri’s care. There’s no way of knowing who exactly selected each doctor during this period, but there’s also no record of the Schindlers objecting to the choice of doctors during this period. (That I know of).
I certainly have not done that in this thread. Nor am I convinced that agreement on a medical fact in any way renders all ethical considerations (or legal considerations) irrelevant. That Schiavo’s mind died long before her body makes some ethical considerations (for instance, worrying about if she’s suffering) moot, but many others (for instance, concerns about how precedent could harm disabled people) can and should still be discussed.
Here are a couple of links about the troubling fact that “precedent could harm disabled people” that I think are worth pondering
One
And, another story where a fully sentient and conscious woman who had asked for life prolongation seems to have had unconsiousness induced as part of the process that ended her life under Texas’ Futile Care Law.
Darnit the links aren’t working.
But if you Google “Andrea Clark and Texas futile care” you’ll find the second, and the first name “Hale” you’ll find the first, a story of a woman diagnosed with PVS, who had her life in the court’s hands…and then …woke up.
first name should read Halei
Ampersand, I’m starting to feel like we’re quibbling. I think we agree on the deeper issues in the Schiavo case. On the other hand, I can’t quite convince myself that the presence or absence of the PVS diagnosis, and the presence or absence of medical unanimity as to that diagnosis, isn’t closely connected to those isssues.
Harriet McBryde Johnson makes a series excellent points in the Slate article you mentioned. Many of them seem to me morally unassailable. Except there is a way to reject them all — and that’s to conclude that Schiavo was, in essence, already dead, and that keeping her body alive was a sort of grotesque and expensive modern form of necromancy. If that conclusion can be accepted, then the fear, disgust, and hatred toward extreme disability that Johnson talks about are allowed free rein. The PVS diagnosis, in the Schiavo case, threw a cloak of medical respectability over the desire to be rid of an inconvenient person.
I’m still inclined to dispute medical unanimity in the case of the Schiavo diagnosis (and prepared to do so if desired, albeit wearily) but as I surfed the net to remind myself of the facts of the case I realized something far more important, something I feel foolish for not having understood before. Namely, that PVS is in itself a virtually meaningless diagnosis. imfunnytoo makes this point with the dramatic but underreported cases of Andrea Clark and Haleigh Poutre. In the last few days, The Guardian newspaper in Britain has run two articles which further make the case that a diagnosis of PVS can have little prognostic significance: link and link.
All this seems to confirm what an analyst for Not Dead Yet said in reference to the Schiavo case:
One final point. I wasn’t accusing you, Ampersand, of trying to sweep moral considerations aside, and I’d feel terrible if I let that impression stand. The vehemence I referred to was that of the post by Amazing Aunty to which I was originally responding: “Honestly, how dare you suggest…” Whether the “you” in question is Blue (as I thought) or Hentoff (as I gather you think), I guess there’s no way to say for certain.