RE: Articulating our perspective to progressives, by Josie Byzek: I really like the article by Josie Byzek. "Turning the Tide: Journal of Anti-Racist Action, Research & Education," which I edit, published in our last issue a first-person account by Diane Coleman of "Not Dead Yet" about going to see "Million Dollar Baby" in her wheelchair, as well as NDY's Q&A about the film. I have been emailing various lists and groups about the importance of the disability-rights perspective on the Schiavo case, but I especially like this piece because it clearly distinguishes your view from the pro-lifers. The "progressive" figures who have been speaking out recently, such as Jesse Jackson, Ralph Nader and even Nat Hentoff have edged too close to the right-to-lifer framing of the issue. Hentoff at least is aware of and emphasizes the disabled movement response and perspective, as he did on Amy Goodman's show. As an anti-racist and anti-fascist, I think it is important to take stand against "mercy killing" responses to disability. I also think that the disabled movement should emphasize more the anti-fascist character of their stance, because it would both attract more attention, and change the terms of the whole discussion. Several years ago, our anti-racist group here in L.A. sponsored a Martin Luther King Jr. Day rally against bigoted violence after a cross was burned on a Black family's lawn and a synagogue was vandalized with swastikas. But we also included a disabled rights activist who spoke about harassment and hate crimes against disabled people, including a case where the access ramp at a private home was the target of an arson after repeated harrassment and name-calling against the residents as "crips." Framing the discussion with a reminder of the Nazi view of the disabled as a blight to be eliminated, and the history in this country of the forced sterilization of the "feeble-minded" is an important way to change the discourse on this issue, because it more clearly links Terry Schiavo's rights to those of a whole range of disabled people in a variety of situations. Michael Novick, Los Angeles - Thu, 31 Mar 2005 RE: Articulating our perspective to progressives, by Josie Byzek: Don't be so scared of associating with ´pro-lifersª - they're the only ones sticking up for the rights of the disabled - outside of the disabled community that is. You've been abandoned by the progressives. Get out of the ghetto - scared that your so-called progressive buddies might not think you're cool... or worth keeping alive? Why in your opinion is a disabled person more worthy of life than a fetus?? Is this something that can really be quantified? Would a deformed fetus have more of a right to live than a non-deformed fetus? I believe that we're all persons with an inherent right to life, regardless of race, color, creed, disability... or whether in utero waiting to be born. A fetus is also a human life with the rights of ´personhoodª, regardless of whether you have a religious belief in the sanctity of life, or approach the issue from purely a humanistic standpoint. Abortion and euthanasia are connected by the philosophy that some lives are not worthy of life, an idea that was expressed during the Weimar Republic and then implemented by the medical deities under the Nazis. Get over your hang-ups regarding ´pro-lifersª. Let's fight this battle alongside each other. Terri Schiavo was deemed a ´non-personª and deprived of her consitutional rights as a consequence - the right to have an independent advocate represent her wishes in a court of law - because she was unable to communicate those wishes herself. Look at how the progressive media treated the whole issue - that she was PVS, brain dead, etc. Were they advocating for Terri's right to be returned to the loving care of her family? Wake up, please. A knee-jerk pro-euthanasia position is central to progressive politics. They're not your friends. BTW, I'm not a Reublican, nor a Bush supporter. I'm a former Dem, now independent, but can't stomach the pro-abortion rhetoric that's such a prominent feature of the new Democratic agenda Robert Stalbow, - Thu, 31 Mar 2005 RE: Rest in peace, Terri Schiavo: Persons with disabilities have had our lives devalued by the murder of Terri Schlinder Schaivo. We must unite on this issue and let our voices be heard in the mainstream press. Our lives are in danger. Physicians and the public simply do not understand "quality of life." I use a ventilator at night. Does this mean I have no quality of life? I am disheartened when I hear people with disabilities say that Michael Schaivo knew his wife's wishes. Balooney! Syndicated columnist, Anna Quindlen, and Geraldine Farraro have both complained that Terri is unpleasant to look at. Well, sometimes disability isn't pretty. Does this mean we should be murdered? Apparently Peter Singer of Princeton University thinks so. He advocates killing all children born with disabilities. Jack Kevorkian got his jollies killing persons with disabilities, even those that were not terminal. Dr. Death even had plans to open sites called "obitoriums" where persons with disabilities could go to be euthanized. Dr. Death wanted to harvest our organs for nondisabled folks. These are scary times. We're NOT DEAD YET! Valerie Brew-Parrish Plainfield, IL - Thu, 31 Mar 2005 RE: No Guts, No Glory: I do not feel a person who has no functional cortex and or cerebellum, according to many court appointed neutral neurologists, would qualify as having a handicapping condition. I feel the equating of this case with the rights of disabled people is inaccurate and unfair. The family has tried many treatments but her brain futher atrophied because of so many cells died from being oxygen deprived for around 6 min. I have worked with many people with brain damage from accidents and illesses, and also with people with various handicapping conditions since birth. I have seen some wonderful improvements in people that had poor prognosis, and sadly a girl who also never recovered from a vegetative state, wonderful family, lots of attention etc. but she died after a few years. This is very different, People die, these painful decisions are made thousands of times every year. This case should never have become the huge insane mess that it has, Now they have turned her into a cottage industry for the far fetched religious right, that is pathetic and I don't think the path she would have chosen for herself. For a $100 donation you can get a video. How sad. The article was very thoughtful, but I disagree. Jacalyn Engler Westfield, NJ - Tue, 29 Mar 2005 RE: Incontinence, by John Kelly: I'm disabled and I too, deal with incontinence among many other physically-limiting realities. I also participate in target shooting, (I have a concealed carry permit), exploring the Nevada desert via an all terrain vehicle, shopping at Walmartô via a power wheelchair and creating beaded jewelry. I have only one word for the nitwits who put so much emphasis on the horror of the disabled being inconvenient because of their incontinence and (it) making our lives "not worth living." The word is DEPENDS! Liberal death-mongers, commit it to memory!!! Karen August Pahrump, NV - Tue, 29 Mar 2005 RE: Articulating our perspective to progressives, by Josie Byzek: Let me shout out a 'Hazzah' to Josie Byzek. I was wondering whether NOW had any interest in the Schiavo case..and cases like it. Ms Byzek's article is very well stated. I remain pro choice while supporting the dignity, right to live, right to appropriate accomodations, right to adequate healthcare for disabled persons. I realize it's an awkward position to be in standing next to the likes of Randall Terry..(Yikes) but I also understand there seems to be a huge disconnect between the human rights/disability rights movement and Progressives. This society has become a scary place to live in with all the negative sterotyping of disabled person's "quality of life"..from BOTH sides of the political spectrum. I also realize that the Hard Right, to some extent, has "used" the faithful religious to further their so-called agenda...it may be backfiring. I ask myself: Which way to I turn; I'm having to fight the Right AND the Left! Excellent article. I'm reassured by Ms Byzek's insight Kristine, Santa Cruz, CA - Tue, 29 Mar 2005 RE: Aphasia: As a seizure patient I have at times been unable to open my eyes or to communicate with the individuals who were around me. Though no sound emminated from my lips, I knew what was going on and knew who was talking to me and even understood what they were saying. I felt great pain but was incapable of making sound. Now, suppose Terri Shiavo is in such a predicament! Are we going to starve such a woman to death and kill her? I hope not! Karen Huskins Bakersville, NC - Sun, 27 Mar 2005 I appreciated the sentiments expressed by Ms. Johnson in her article about Terri Shiavo. I live in Japan. Very recently a doctor removed the feeding tube from a terminally ill patient who requested it. The family took the doctor to court and she was found guilty of murder with a 3-year suspended sentence. In Japan, little is done for those severely disabled or those of a very advanced age, but water and nourishment are provided. In most cases, 1/2 the daily nutrition is supplied since the patient is comatose, but it is supplied. This seems a humane way to allow nature to take its course, which it most certainly does. I have a living will, but it is virtually unheard of in Japan, the above being the universally accepted treatment. Medicine is socialized so although there is cost involved, the family does not suffer for it. The U.S. offers the most advanced treatment on the planet, but sometimes not the most humane. Judith Clancy Kyoto, Japan - Sun, 27 Mar 2005 RE: Aphasia: I myself come from a family of dyslesics so I can relate to this disappearing experience of not being understood. First of all, mankind must understand that emotive intelligence has strictly nothing to do with language. Nothing whatsoever! And please may the scientific community be humble, as they know practically nothing of how the brain works. But this is not only what's at stake here regarding the Terri Shiavo's case. Please have compassion for the parents who adore ADORE their child AS IS! This will kill them as well -- and this society will have murdered for sure at least two people. Valerie A. Gagnon - Sat, 26 Mar 2005 RE: No Guts, No Glory: I was stunned by the article; it opened my eyes, I think that she is absolutely right! I am taking the article to the Unitarian study group where we discussed this last week. I think it may open some other minds besides mine. Thank you Ingrid. Adele Foutz Farmington, NM - Sat, 26 Mar 2005 RE: No Guts, No Glory: There is a story in Jewish lore about the Rabbi who was being kept alive by the prayers of his students for the soul cannot depart the body during prayers. One of his servants accidently dropped a water jug while she was watching this scene, startling his students who stopped their prayers for just a moment. During that moment the rabbi's soul was allowed to depart. This servant was considered blessed for the rabbi had reached the end of his life and was only being kept alive "artifically" by the intervention of man instead of being allowed to pass on with dignity and in G-d's time. The only doctors who agree that Ms. Schiavo in not in a vegetative state are those who have not examined her. Without the feeding tube, she is being allowed to die. If it is G-d's will for her to live He can certainly do so with or without a feeding tube. Remember the case of Karen Ann Quinlan who lived years after her respirator was discontinued. I watched my mother die from cancer, at home, with her family around her, with the support of Hospice. All the food and water she wanted was made available to her but, at the end, even her special requests were finally refused and, without water or food, she passed gently away. Some would say today that she was being "murdered" by starvation and dehydration and certainly those were two things that immediately contributed to her death but even with radiation and chemotheray she would have died - with much less dignity. I would have liked her to have lived much longer but it was not to be and I, by arranging for Hospice's help, helped her pass easily. I truly resent those who say her husband was guilty of abuse - he who studied nursing so he could better care for her. For 15 years she existed without bedsores or fatal infections. For eight years she had due process in every court available to her. Lest I be called insensitive to the needs of the disabled let me say that I, myself, am diagnosed with Multiple Sclerosis and I know those things that are important to my quality of live - the ability to continue to communicate, to be creative, to interact in a meaningful way with my surroundings, and to continue to contribute to society as I have as a nurse and counselor, a quilter, a volunteer for various organizations in various capacities. However, I have made it clear, both verbally and in writing, that should those all of those abilities be taken from me and the only way that my organism be kept "alive" is by respirator or feeding tube, I want none of it. I would rather be remembered for my active and vibrant live than my vegetative body. Unfortunately, Ms. Schiavo will be only be remembered by the futile efforts of her parents and the misguided crowds who celebrate her existence rather than her life. How sad. B. S. Dank Columbia, MD - Sat, 26 Mar 2005 RE: Death Watch: Terri Schiavo: Well Mrs. Schiavo HAS Certainly become the "mascot" (if you will) for people in the disability rights movement. I myself work with many people that have disabilities. At this point it is mere SPECULATION as to what the lady would've TRULY wanted. It's VERY easy to blame the husband. Of course the disability rights movement also has MANY feminists that blame EVERYTHING bad on the white-heterosexual male (yes I've been tracking That AGENDA for YEARS now). Long story short-as far as what HER wishes wouldv'e been-daily I see on tv the face of Terri; pretty much this rather macabre-looking Grinning, almost drooling head. Yes sure we must question if she was able to make an INFORMED DECISION (knowing all Options[aggressive therapy, etc]) what would she choose. Seeing as how I already WORK in this "field" I think I am already aware of available options should I ever end up in that "predicament" That's why I have an appointment next week to set up MY living will! Knowing options as I do I STILL wouldn't want to be a "macabre grinning drooling head" for ANY length of time. Would YOU? J L Smith Memphis - Fri, 25 Mar 2005 RE article: Dangerous Times I found Steve Drake's review of Million Dollar Baby enlightening, to say the least. As a non-disabled person, I did not realize how perturbing and even frightening modern society's attitudes can be for those who are disabled. For those of us non-disabled people, it is hard to imagine what we might really feel if we were to have some permanently disabling injury or illness. It is so easy to say, "OH, I wouldn't want to live like that". I first looked at Terri Schiavo's ordeal from a political point of view, i.e., that this is government sponsored murder. I still believe that, but I also have gained a greater awareness of what my fellow citizens who happen to be disabled are thinking and feeling. This has only occured because I have been scouring the Internet looking for factual information, and discovered all the web sites that represent the views of the disabled. Despite all the bickering, and the saddness and horror of Terri's experience, I think some good will come from her death (which looks now as inevitable) because it will awaken in America a whole new look at how human beings live, interact with each other, and die. Thank you for laying out something I did not previously understand. May God bless Terri Schiavo and her family. They have demonstrated that life is extremely precious and in our modern, lets all have fun society, we have lost sight of some very important things. Joe Oliva Huntington, NY - Fri, 25 Mar 2005 RE: Death watch: Terri Schiavo: I have seen several disturbing articles since the removal of Terri's tube soothing the public with assurance that she's not likely to feel discomfort, using examples of the diminished appetites of terminally ill patients as reinforcement. This is a seriously misguided comparison; Terri is NOT terminally ill. It has certainly been shown that people in the advanced stages of a terminal disease often lose the desire to eat, and that imposed feedings may cause discomfort as the body prepares naturally for death, but death in the case of a terminally ill person comes AS A RESULT OF THE DISEASE PROCESS, while Terri's cause of death will certainly be starvation, which IS unpleasant. I work for a hospice, and am very distressed at the assumption that a person who supports the hospice philosophy must also support the idea that the life of a person who is severely disabled is not worth living. I know that Terri does not belong in a hospice - though I am at least comforted to know that she will receive care to relieve her symptoms as she dies. I am very troubled at the thought of the public being charmed into thinking that the starvation of a disabled woman is "death with dignity", especially with the apple-and-orange comparison of disability with disease. Evonne Acevedo Chicago - Fri, 25 Mar 2005 RE: No Guts, No Glory: I am grateful for the author's honesty and energy and passion. I, too, have noticed that the political line-up of the case of Terri Schiavo makes the prospect of speaking up in favor of defending her life a scary proposition for lefties like me and many of you. I am grateful that the author of this article names this, and calls members of the women's movement (among others) to come to a courageous stand. I still don't think this particular case is an easy one to call in either direction. But, the more dialogue we have, the more thoughtful, impassioned testimonies we have on both sides, the more rich and truthful the conversation becomes. Thank you. Ben Hall Providence, RI - Fri, 25 Mar 2005 RE: No Guts, No Glory: The cold-blooded murder by starvation and dehydration of Terry Schiavo cries out for more forceful action on the part of disability advocates. Gandhi-style nonviolence, while appropriate in many situations, was totally inapproriate in the face of the Shoah and German psychiatry's T4 "euthanasia" program in the 1930's and 1940's. Back then, the morally correct course of action would have been to incapacitate the murderers so that they could not go on killing. As the Talmud (Sanhedrin 72a) notes: "If someone comes to kill you, kill him first." Or on Thomas Masaryk's paraphrase of this Talmudic concept, "If someone attacks me with the intention of killing me, I shall defend myself, and if I cannot avoid it, I shall kill the attacker. If one of us two must be killed, let the one be killed who has the bad intentions." I posted on a Jewish website, www.failedmessiah.com, asking whether both Michael Schiavo and/or the judges who are ordering Terri Schiavo starved and dehydrated to death are pursuers (rodef in Hebrew) who need to be stopped by whatever means necessary. If the US judiciary is failing us and acting like that of Nazi Germany in its valuation of people with disabilities, perhaps the only recourse we have is to exercise our Second Amendment rights to collective self-defense. Never Again has to mean something here. I recognize that what I am saying is explosive and I do so with some trepidation that it may be taken somewhat out of context. Opting for more physical courses of action is something we are all correctly reluctant to do. But someone needs to have the guts to raise this debate. If the only way to save Terri Schiavo's life is to use physical force, then it is entirely appropriate that we consider options more drastic than mere passive resistance. My closest friend is a woman with a severe disability who receives nourishment through a G-tube. I know what I would do if someone got a judge to order that she not be allowed to have water or Jevity. I'd do whatever it took to save her life from those who would do such a terrible thing. We should have done no less for Terri Schiavo. Stephen Mendelsohn New Britain, CT - Fri, 25 Mar 2005 RE: "Better Dead Than...": The people who want to see Terri Schiavo die, instead of suspending her feeding tube, should consider either lethal injection or some other means of ending her life "humanely" or peacefully. But that would mean they would have that load of guilt on them as they "took her Life". So they cover up this "legal murder" by letting her "die naturally" by suspending her food and nutrition (i.e death by starvation). Legally speaking, forced death by starvation is not "natural"...no one would be allowed to put a dog down that way. Even a criminal on death row would receive more "humane" treatment in an execution than death by starvation. Food and nutrition sustain any and all Life. Many who want to see Terri die are confusing a feeding tube with "artificial life support". So she has to be fed through a tube as another uses a utensil or straw; her feeding is just done in a different way. To remove her nutritional tube (which, by the way, is only inserted at her meal times) and allow her to suffer for several days with an agonizing death by starvation is horrendous. No matter how healthy a person is, lack of food and water would kill anyone. In Terri's situation, it would not be her "brain damage" that killed her, but her lack of daily sustenance and nutrition. Yes, only the death by starvation (unnatural coercion) requested by her husband and ordered by the judge and carried through by the doctor is going to kill her. In the case of respected notable, Christopher Reeve, who passed away a few months ago due to infection by bed soars, due to his paralysis condition, needed a "tracheal breathing tube" to keep him breathing and viable. No one seemed to be advocating his demise. Was it only because he was "famous" and still able to verbally communicate? Who are we to say that Terri doesn't have thought and feeling and awareness. Yes, parts of her brain are damaged, but the brain is so complex no one can rule out that her whole brain is useless. Her brain still functions her expressions and smiles and breathing and her circulatory and nervous and digestive systems. The human brain (as well as the whole body) is a complex puzzle. We have only scratched the surface of knowing and understanding the capabilties and the science the body and the brain envelops and how it all functions. In cases such as these, it is better to go with the benefit of the doubt. We can be an intelligent and compassionate human species on the most part, but some people still have a long way to go in the common sense and humanitarian departments of Life. People need to focus on the real issues at hand and then ask themselves again -- is there any real rational reason this woman's Life be taken from her? Terri does not appear to be suffering in anyway. She actually looks aware and quite happy in photos taken of her interacting with her family. Her body (all organs included) has proven her ability to live and other than her handicap in needing a feeding tube (only at meal time) because she is not able to take food by mouth, she is quite viable. [There is no need to end her life by starvation or any other means.] Terri is not interferring in anyone's life nor is she in anyone's way...(so why do so many want to see her die?) Jennifer M. Firth Black Mountain, NC - Fri, 25 Mar 2005 RE: No Guts, No Glory: I am a disabled man but I believe we have common cause and I believe Ingrid Tischer is right about feminists. Somehow the world views the disabled, as a friend of mine says, as a mirror of what they might become. They fear us for they know that circumstances could make them exactly like us. Yet, we are still human -- perhaps more so -- because we are conscious of our feelings in ways that I know I was not before my disability came to be a companion. It is time to speak up and have a dialogue with those who will speak with us to provide a broader, deeper understanding of our concerns and issues. It is time to be included in the community in ways that we have not been. We are human beings who happen to have a disability. Recognize and appreciate our gifts for we have much to offer. Barney Mayse Prairie Village, KS - Wed, 23 Mar 2005 RE: Aphasia: Well now, even though I am of able mind and body I am learning. The current issue surrounding Terri Schiavo has left me with many more questions than answers. And having just received the article "No; It's Not About Terri Schiavo Anymore" in an email, I was introduced to your very informative website. I broke my leg in 4 places resulting in a rod and a plate and many many screws just over a year ago. During my recovery I had the occasion to go shopping at our neighborhood grocery store IN A WHEEL CHAIR! I was truly amazed at how I had become invisible. It was one of the most profound experiences of my life. I have a lot left to learn about the world we live in and the lives of my fellow citizens of this world. Thank you for helping me to see. Dave Lohman Longmont, CO - Tue, 22 Mar 2005 RE: No Guts, No Glory: I have been searching in vain for someone from the ACLU and NOW to speak out against what is happening to Terri Schiavo. Ms. Tischer's article has been the only one I've found so far expressing the irony of the silence from both these organizations. I say irony, not perplexity. You don't have to be a religious "nut" to figure out why NOW is especially silent. With little effort you'll find many voices decades ago who predicted that the natural progession of abortion would lead to the killing of more mature, but mutually perceived inconvenient, people. How many members of NOW embrace the vanity of plastic surgery as a must? I've seen plenty a proud botoxed and breast implanted NOW members ala Hollywood. To have a wrinkle would be horrible. To be wheelchair bound... a crime! Why, they'd only get acting roles in the typical condescending after-school-special handicapped roles (cue the pitiful sounding tinkling piano music). Take a trip to Europe, Ms. Tischer. You'll not be welcome in many places there. You're taking up too many "resources." England is reviewing a case right now on a late-term abortion of a disabled baby who had a cleft palete (see, that's what disabled is in England--or living past 65). His mother decided his "quality of life" would be just too insignificant to be born. You had no sympathy for the able and disabled bodied unborn. How ever did you expect anyone to care about the disabled now? You might say I find Ms. Tisher's exasperation with NOW sort of, well, ironic. Teresa Ewald Newport, DE - Wed, 23 Mar 2005 RE: Does Blind Justice Do Justice to Blind People?: I totally agree with reviewer Jesse Kaysen about this new cop show. And interestingly enough, the situations and scenes depicted on this program are extremely resonant to me although I am not blind. I am often treated the same way because I am hearing-impaired and every scene makes me wince with remembering things that I have experienced as a result of my disability. I like that the show exposes how people tend to dismiss or second guess what Dunbar says. They expect that he must always be right. They expect him to hold back from acting like a normal tough cop. Some even refuse to accommodate him and make extremely snide comments. And his coworkers scoff when he uses his other senses creatively to compensate for his blindness. And, finally, even people who mean well embarrass him with comments that are unnecessary or are phrased too bluntly. I have watched two episodes and felt as if I were living through both of them emotionally. I hope that other people who watch this show will be able to grasp it's finely nuanced and extremely accurate presentation of the social climate that a person with an obvious disability must contend with. Ms. Billie M. Spaight Richmond Hill, NY - Wed, 23 Mar 2005 RE: The Hearing to Save Terri Schiavo's Life: I wonder why nobody asks why Schiavo is so hot to kill his wife. Perhaps it isn't him but his girlfriend who wants to get rid of her competition? Perhaps he wants to murder her so he can get the rest of the money? Well, take the perhaps out of that last question, I'd say if not the whole reason, it's a big factor. Also, I understand there's a large insurance policy pending payout to Schiavo when he's successfully murdered his wife. I've watched him during the newscasts and can say I've rarely seen a colder more calculating man. I also wonder why the Florida judge is so very co-operative with Schiavo. Is he on the payroll of Schiavo, and/or his attorney? It seems odd that when it comes to a matter of her life, or death, this JUDGE is so adament that it be death. It seems odd that all therapy and even normal healthcare has been forbidden by Schiavo and the JUDGE sees nothing out of line with it. Of course that way Schiavo can put the money in his pocket rather than spending it as it was intended in treating his wife. Maybe Schiavo has found the perfect murder, get a JUDGE to do it. LeRoy Murray Sherburne, NY - Wed, 23 Mar 2005 Add your comments. Read more letters.