tag:blogger.com,1999:blog-1556371561007953336.post1028836247179609120..comments2024-03-16T16:44:18.220-07:00Comments on Bad Cripple: Choosing to Die has Ramificationswilliam Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-1556371561007953336.post-3095535217845207462012-06-28T11:07:40.200-07:002012-06-28T11:07:40.200-07:00I would agree to disagree, but worry, that like Cu...I would agree to disagree, but worry, that like Curtis Johnson, such would be disallowed.<br /><br />Suicide is the 7th cause of the death in the US for males. But the underfunded and apathy generally for suicide (one ever 16 minutes) is one I agree on - give more support and options. Except it appears that you are not against suicide as much as those in wheelchairs who choose it. <br /><br />Nor does your response seem to be about Curtis Johnson, the individual, but your anger at a misunderstood idea oft thought about some SCI's. <br /><br />For me, this is about Mr Curtis Johnson, who wrote the article in April, which was reprinted. In all versions, there is an easy 'contact' button. I mention that because you say, 'why has no one spoken to him about brain scape...' I emailed him on another matter, but am not familiar with 'brain scape'. Did you contact him? You could be that someone, his advocate of options. I myself would like to learn more, as Dragon does not work degenerating vocal cords and diaphram and this 'comment' has taken three hours to type. This common issues, his inability to be understood, is why he is no longer as sociable, not the accessibility issues you bring up.<br /><br />His article was in part about choice, but also an arguement for turning a bad situation of rapid terminal disease into what he sees as a good one through organ donation. It is not about adapting to a new stable reality, as you did 35 years ago, because it is not about SCI. The grief cycle, which for many in rehab or post rehab of SCI may be longer than his entire lifespan. I don't know. But I do know that every change, every loss requires a new grief cycle and new challenges to adapt, knowing that there continues to be constant flux downward, until death. I don't know how often he has adapted, so I can't understand your conclusion that he 'was not prepared to learn how to adapt...'<br /><br />In mixing a rapid degenerative terminal disease and drawing conclusions instead about possible individuals post traumatic injuries which are stable and non degenerative, it seems there is a lack of ability to adapt or accept the differences.<br /><br />Studies put suicide for those with ALS at six times higher than average, and that does not include TS (terminal sedation, for those who have exceeded pain control). That stat is something to get angry about, and a drive to improve quality of life. However you state what But that is not what angers you is that because he is so different, and dying, his ideas might be seen with sympathy, and thus might make people view those in wheelchairs differently.<br /> <br />I admire your personal example of determination and expectation of equality as an individual (like when you went skiing with family). Yet the picture you paint is of those, like you, SCI's, who by being disabled, are easily led, weak willed, unwanting and unable to adapt or even collectively to be seen or treated as individuals. If this is the future you see, then yes, advocate for SCI's or other wheelchair stable users to adapt. But I see no connection to Mr. Johnson and ALS. <br /><br />It seems that you and Mr. Johnson are talking past each other, as he talks about views and choices for the dying, and you talk about choices and views for those with disabilities. As he says, "it appears we are a primitive species when comes to dealing with death, and especially inevitable death."<br /><br />I hope you continue to advocate for the rights of the disabled, particularly preserving those who are unable to defend or advocate for themselves. And I also hope that your views and understanding of terminal and degenerative diseases allow those individuals involved to take that journey, physically and mentally, as they are able.Elizabeth McClunghttps://www.blogger.com/profile/03627373214555333537noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-77698928487178246782012-06-24T17:15:38.074-07:002012-06-24T17:15:38.074-07:00I agree that choosing to die has ramificiations. ...I agree that choosing to die has ramificiations. I am not completely convinced that our lives are completely our own. When one of us chooses to end our life, there are ramifications for many other people. If one believes that we are an interdependent species, I believe that when we are chooseing to end our own life we have to be cognisant of all of the people we know and who we don't know who will be affected by that decision. I am not convinced that dependency justifies death. I can't tell you why but I believe that people in extreme physical pain who are also dying may choose to take enough medication to ease the pain knowing that it may kill them. I'm not convinced that dependency alone is a good enough reason though I know I say this as a person who has the means to be quite independent.northernot037https://www.blogger.com/profile/08112179456819055427noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-50169907749697768312012-06-12T08:03:36.153-07:002012-06-12T08:03:36.153-07:00Phil, I disagree with your first statement. It is...Phil, I disagree with your first statement. It is a choice that I believe a person should have in extreme situations, but it does contribute to the devaluation of the disabled and/or the very sick just by making it a legitimate possibility. It's a line that when it is crossed gets fuzzier with each crossing.<br /><br />There would be an awful lot of deaths, suicides of depressed people if that becomes an accepted thing. It's contagious enough--one teen commits suicide and it becomes a frightening reality and possibility, with a statistical increase in those in that community following suit. That is well known in psychological circles. Sick people, handicapped people can be a lot of work, trouble and money. That alone is motive to encourage any of them to suicide when others do not want to contribute to their care and have to do so.Catherinehttps://www.blogger.com/profile/11149885637140617891noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-79572333325806776572012-06-12T03:14:27.567-07:002012-06-12T03:14:27.567-07:00Bill,I have read and re-read your post on the rami...Bill,I have read and re-read your post on the ramifications of choosing death. I do not believe that when a person chooses to die that he or she contributes to the devaluation of the disabled or the very sick.<br /><br />Some people choose not to adapt, not to "suffer", not to be alone...some people believe that their life is not worth living. These choices are personal choices which are complex, driven by forces unknown to us and perhaps not understandable. In many cases, the choice to die is shaped by a person's belief in the afterlife.<br /><br />One cannot alter a person's choice to die by telling them how to adapt nor by illustrating how that choice devalues disability (the latter is an intellectual debate dying is a personal, spiritual and emotional choice.) Death is a right, for whatever reason drives a person and ultimately it does have ramifications only for the decision maker.<br /><br />Perhaps we need to develop an ethic is allowing people to just die is they choose. Dying is ok and should not be questioned by anyone.Phil Dzialohttps://www.blogger.com/profile/04150881545903849250noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-79414549634984794342012-06-11T21:45:38.139-07:002012-06-11T21:45:38.139-07:00Bill, I am so sensitive to nearly everything you w...Bill, I am so sensitive to nearly everything you write about and have been educated, profoundly, when I've visited here. But I have to say that I find your own views just as extreme as those expressed by some of those you excoriate. As the parent of a child with severe disabilities, I am in agreement with you that people with disabilities are often an afterthought, but I don't believe that all of American society "disvalues" people like Mr. Johnson and yourself. I think thousands, if not more, people have worked damn hard for many, many years to rectify abysmal conditions and cultural constraints, and while there is mind-boggling work to do, there has been much "progress." It might be entirely subjective, but I find the arguments used in the disability community against "mercy killing" and "euthanasia" to often be horribly simplistic and more indicative of the extreme aversion to death of Americans and perhaps other western industrialized countries.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-49908370597001053042012-06-11T14:10:56.919-07:002012-06-11T14:10:56.919-07:00The whole shift from keeping people alive to appla...The whole shift from keeping people alive to applauding them for not wanting be kept alive through technology comes from the old "Whose Life Is It Anyways?", in my opinon. THe problem is that when the pendulum of opinions swings, it can go too far over, and this is truly a dangerous area. I am hoping that some moderation of all of this occurs, and those like you will be helping it along sooner rather than later, I hope.<br /><br />A very dear friend of mine and Godmother to my two youngest, chose not to live with ALS. There was no talking her out of it. She live less than 2 years after dx and to her that was too long. Yes, she did not want to live the way her disease was forcing her to go. She had access to all of the information and way more funds than most, but living with that kind of dependence was not for her.Catherinehttps://www.blogger.com/profile/11149885637140617891noreply@blogger.com