tag:blogger.com,1999:blog-4424288185418554374.post4906859630903687095..comments2023-12-23T20:32:03.960-08:00Comments on otherspoon: Working for Disability Rights and End of Life Rights.Ann Neumannhttp://www.blogger.com/profile/13690469764844904030noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-4424288185418554374.post-15024962108616792992010-03-21T14:32:28.497-07:002010-03-21T14:32:28.497-07:00Well said, Okakura. I'm delighted to have thi...Well said, Okakura. I'm delighted to have this exchange.<br /><br />You and I agree on most things. Primarily, I think this is an issue because of how rapidly our definition of death has changed. And to overlay another changing definition: what do we mean by disability? These two intersect at a very emotionally charged place.<br /><br />Thanks so much for your insightful comments and what I hope will be continued readership!<br /><br />Very best, AnnAnn Neumannhttps://www.blogger.com/profile/13690469764844904030noreply@blogger.comtag:blogger.com,1999:blog-4424288185418554374.post-82324547722959083972010-03-20T15:00:46.678-07:002010-03-20T15:00:46.678-07:00Ann: Ditto on the appreciation of your posts and g...Ann: Ditto on the appreciation of your posts and gracious presentation. So happy to have discovered your blog in the process and will continue to read (and post) in the future.<br /><br />I have some much respect and agreement with proponents of the social disability model but remain frustrated by the slippery-slope hijacking of the public debate over assisted dying --esecially so because I think it puts the more radical (and often, loudest)disability rights advocates in the ironic position of actually arguing AGAINST another's autonomy rights. I found it especially disheartening and irrational that such activists would construe Terri Schiavo's situation - an individual whose cerebral cortex was largely eviscerated - as a case of disability bias. Schiavo's was, to use one neurologist's term - "amented." No consciousness whatsover and no way to regrow the parts of the brain responsible for sentience. Not Alzheimer's, not profound retardation: both evidence consciousness. PVS is physiologic blank slate. A total irretrievable loss of consciousness resembles death... not disability. The only interests at stake in the Schiavo case were those of her family, and the legal sytem unanimously and repeatedly ruled that it was the husband who was in the best position to know Terri's likely wishes. And these same activists appeared willingfully ignorant of the struggles that both husband and parents went through for nearly 3 years before finally accepted the fact that Terri was gone (though the parent's were later and cruelly tricked into thinking there was hope for recovery by a few quacks who never examined her or the medical record). <br /><br />Admittedly, PVS is something of an ethical 'black hole' in that such individuals are neither dead nor terminally ill, at least in the conventional sense. That they can potentially be kept physiologically alive by a Peg tube and comprehensive 24/7 nursing care makes their situation even worse in the opinion of most -a medically maintained 'purgatory' with no way out and no hope for anything that the individual could experience as a benefit. Medically maintaining the shell of someone who is no longer a person may be meant compassionately but it comes off as a somewhat perverse form of body worship. Almost like a home version of cryogenic preservation. Not something most sane people would want for themselves and certainly not something that society must promote or else risk the slipppery slide into eugenics. <br /><br />I consider suicide a tremendous tragedy and our communal responsibility to protect any individuals and families from such an irreversible loss. This includes anyone contemplating such an act: teens, adults, seniors, newly disabled...anyone. That said, I simply don't consider assited dying to constitute "suicide" in any meaningful sense of the word. To argue otherwise, i think, is to engage in the worst sort of vitalism and to commit oneself to the vicissitudes of the technological imperative at the end of life -- something I wouldn't wish on anyone.Okakurahttps://www.blogger.com/profile/00923344800321708904noreply@blogger.comtag:blogger.com,1999:blog-4424288185418554374.post-77362561778531113802010-03-20T05:30:42.738-07:002010-03-20T05:30:42.738-07:00Hi Okakura,
I've been reading and appreciat...Hi Okakura, <br /><br />I've been reading and appreciating your comments. It's nice to hear a reasonable voice! William Peace at Bad Cripple and I have started a friendship over this last rally of Ann-bashing: a fair price, I admit. <br /><br />Not disabled, I am rather vulnerable when approaching the disabled community with a patients' rights rubric that includes the rights of the elderly to remove themselves from aggressive but ineffective treatment (including defibrillators, respirators and artificial nutrition and hydration) and aid in dying as regulated in Oregon and Washington.<br /><br />The fears that the disabled have of devaluation and discrimination are real. I recognize this. But I also think that they are exacerbated by those who are afraid of death (most of us) and by misunderstanding of the dying process. And then there are always emotional and dramatic national cases - easily misunderstood and misconstrued by the media - like the Terri Schiavo case. Yet in 2005, five years ago on March 31, when Terri Schiavo died, two national polls showed that the public disapproved of the Bush administration's intervention in the decision.<br /><br />Cicely Saunders, the modern founder of hospice, wrote and talked a lot about total pain: the concept that the actively dying had both physical and emotional pain that prevented them from dying well. I think we should work to better understand what a good death means in our hyper-medicalized age.<br /><br />And just to make a point that I see unclearly used in other posts: terminal is a medical diagnosis. It may not determine the length of life left with absolute accuracy but the diagnosis, barring miracles, is scientific.<br /><br />It's great to hear from you. Thanks for coming by! AnnAnn Neumannhttps://www.blogger.com/profile/13690469764844904030noreply@blogger.comtag:blogger.com,1999:blog-4424288185418554374.post-16592563759213072372010-03-19T17:37:24.806-07:002010-03-19T17:37:24.806-07:00Read your posts in "Bad Cripple" and agr...Read your posts in "Bad Cripple" and agreed wholeheartedly with your remarks. For what its worth, none of my friends with disabilities share the slippery slope/eugenics agenda fears that groups like NDY espouse. It's just frustrating because the diabled do have several legitimate (and long-standing) grievances that should be taken seriously by society but these are obscured by all the 'slippery slope' conspiracy innuendo.Okakurahttps://www.blogger.com/profile/00923344800321708904noreply@blogger.com