RE: Mad as Hell--and fighting for our lives by Zen Garcia: I was overwhelmed by this article. I am a Registered Nurse working toward completion of my bachelors of science in Nursing. I stumbled upon this story while doing research for a presentation. Entitled "Medical Futility." Your article has put a different light on the direction I had intended on taking, and my own thoughts/opinions on this subject. Mr. Garcia went through amazing obstacles to obtain his own independence. That is quite impressive and not always the case. Some people (disabled and not) do little for themselves or in way of contribution to society. This burdens a healthcare system, that, with its trillions of dollars, really has few dollars that actually pays for "healthcare." There is also the reality of greed. Many have no issue with using human suffering as a means to become wealthy. Using illness as a commodity. This article referred to Carol Carr (a person who I was not familiar with) I think it is tragic that she would be pushed to such an extreme. I can see, from the side of the clinician, how she must have felt and how frustrated she was. I worked for 6 years in nursing homes in Massachusetts and New Hampshire. The homes by comparison were excellent in patient/resident care, but fell far to short of what any person deserves. Unfortunately staffing is by far the greatest issue, there is the reality of poor care givers as well. In my years there I felt bad that I could not do more, but the patients in my care knew I did care and did everything I possibly could for them. In a very stressful understaffed facility this was difficult,and I could not do anything to change that. Needless to say I could no longer work in that environment. I wish I had the "magic" way to fix these healthcare problems. It certainly needs a complete overhaul. And it seems only a bit of magic will change it. The hospital environment is not always better. Patient trust is so diminished. The busyness of doctors and nurses leaves patients feeling they are not being listened to and are not getting what they want or need fast enough. Unfortunately there is also the issue of placement after a hospital stay. Not every patient is capable of taking care of themselves at home and there are often no resources for highly incapacitated individuals to return to their homes. I believe "we" as a society need to make resources available that will enable and encourage people to relearn what they used to know, or learn new ways of living. We need more preventive healthcare, community education on the disabled and elderly. The poverty stricken. We need accessible rehabilitation that is both in patient and out patient. With programs to truly rehabilitate people. Physically, emotionally and occupationally. Some of the disabled people I have cared for are so emotional distraught they have no desire to rehabilitate or learn to function productively. They are angry (and for good reason). But there is little resources available, and the ones that are are often difficult to access. This is just a small portion of the problems with healthcare delivery system in this country. But I believe they all boil down to one issue; cost, and who or what will pay for it? Barbara Reardon Newport NH - Thu, 7 Jul 2005 Re: The lawsuit dilemma by Mary Johnson: I agree that businesses need to comply with ADA regulations. The problem I have with your article is that you seem to see Jarek "The Sheriff" Molski as some sort of lone hero. In your opinion, he seems to be the loner who travels from town to town, righting wrongs, protecting the less fortunates, the disabled, from the big bad business owners who willfully try to prevent the disabled from patronizing their establishments. The truth is that this scumbag, who seems to target only small businesses in small towns, is a bully who happens to pocket $4000 for every lawsuit that he files. He knows that these businesses won't be able to afford to defend themselves against the lawsuits, so it's easy money for him as well as that scumbag lawyer of his. How much of that $4000 goes to charity? I would guess none, because it probably goes toward eating at the next few restaurants in whose toilets Mr. Molski plans to have his next hip injury. When I was growing up, my parents owned a small restaurant. They invested a lot of their time and money in this store, and a lot of my childhood was spent behind the counter working the cash register. And even we couldn't keep up with the costs and ended up selling it, my parents had a sense of pride in the fact that they worked hard for something, at least for awhile. Many of the people that Molski is suing are more or less going through the same struggle of keeping a business that my parents did many years ago. So when a stranger spending a few minutes in your store results in a million dollar lawsuit, and your business is barely making ends meet, what are these business owners supposed to do? These people are trying to make an honest living, and when some person who happens to blame everyone else for his disablities tries to take that away (and it seems like he has been successfull in closing a few of these businesses), who does that really help? Are we to believe that this selfish litigation is actually improving society? No wonder starting a business in California sucks. Arnold, take note. Bernard Timtiman Las Vegas - Sun, 26 Jun 2005 RE: Who Put the 'Fair' in 'Fair Housing'? by Patricia Vincent-Piet The Fair Housing Act design and construction requirements are much more than the 5 percent that the article states. Essentially, the Fair Housing Act applies to apartment or condos (that is, buildings with four or more units). The Act requires that ALL GROUND FLOOR units be accessible (per specifications for Fair Housing not ADA). Furthermore, if the building has an elevator all units that can be reached by the elevator must also be designed and constructed to ba accessible. However, there has been little enforcement and compliance with this law and the disability community needs to take action. Barry Weintraub Stafford, VA - Wed, 15 Jun 2005 Patricia Vincent-Piet replies: Yes, the Fair Housing Act does require a no-step entrance and 32-inch door clearances to every apartment on the ground floor for all new buildings -- and requires that ALL units in a building with an elevator fit this criteria. It also requires lowered light switches and higher electrical outlets. The walls in the bathrooms also have to be reinforced to allow for grab bars. It does NOT, however, require a 55-inch turning radius or 32-inch doorways throughout the apartments. It also does not require the lowered countertops or the clearance under sinks. Therefore, even though someone in a chair could get into these apartments, they are far from completely accessible. A person in a chair could easily visit a unit such as this, but without the manuevering space, especially in the bathrooms, it would be very difficult for someone in a chair to live there. My husband and I were scheduled to move into a brand new apartment building about two years ago. Jim uses a wheelchair and transfers to a commode chair for showering. The Fair Housing Act does not require things such as roll-in showers, but it does allow us to have one put in at our own expense. So we took out a loan and paid the management company to have a roll-in-shower put in what we thought was an accessible unit in a brand new building. Three days before we were scheduled to move, we went to see our new apartment. It turned out they had put our roll-in-shower into a "regular" unit. Even though Jim could get into the unit with his chair, there was absolutely no manuevering room in the bathroom. He could barely get through the door, and there was no place to put a handrail. Apparently they had assumed since we did not need the lower countertops in the kitchen, a no-step shower in a standard unit would be acceptable. Even though this unit did meet the Fair Housing criteria, it was far from "accessible". Visitable, perhaps, but not accessible. Fair Housing requirements might look good on paper, but when it comes to actually living in one of the "visitable" units, it's a different story. RE: Just when they thought it was safe to go back in the water . . . by Cal Montgomery My wife and I took a cruise. I am in a wheelchair -- a big motorized one, a 340-lb Hoveround. I booked our cruise with Carnival Cruise, on the ship Celebration. These people bent over backward to make our cruise a good one. The only problem I had was when we docked in the ports -- my wheelchair would not fit on the gangways to exit or enter. So they got 4 men and carried it back and forth. I guess having 265 Shriners aboard might have helped! Ron Williams Lexington, SC - Wed, 22 Jun 2005 RE: What I Cannot Do Myself, Time Does, by Luj Sprohar It is odd that this story cropped up whilst I was searching "pessimism + depression". I am not totally sure, but I think I could be a pessimist. Somehow I just haven't made it well in this world. I got up this morning and turned on the educational channel and lo, there was a thing on psychology -- and part of it dealt with pessimism. I stopped and listened. It seems the global view is related to some source of loss in childhood. The other part of me is very investigative and creative, so I started searching on pessimism to see what is out there to do to fix that worldview. I have been sitting here for an hour and finally found this article. Wow, how uplifting! I can relate to how people seem to drift from you when you are down. It is exciting to see what a person with a real different reality from mine can get accomplished in this big world. Thanks! Robin - Tue, 21 Jun 2005 RE: Father's Day, 2000 by Dick Sobsey: I enjoyed the article-- but at least three times in the article, Mr. Sobsey uses the term"severely handicapped" when describing children with disabilities. I am a self advocate and I read the Rag daily. Since you are a disability rights publication, why didn't you edit this article, changing "severely handicapped" to "with a significant disability"? I noticed that the article was submitted by a guy at a DD center in Alberta, Canada. Does Canada have a strong disability rights movement? I suggest somebody educate this man in people-first language immediately! Michael Tada Honolulu - Thu, 16 Jun 2005 RE: Colorado Gov nixes 'visitability' D. R. Nation This is the first time I've heard of "visitability." It's an idea long overdue. Visitability and "universal design" address similar issues. I am always amazed by builders or individuals who claim they are not interested in accessibility in their homes or bathrooms. If you walk with these people on any street, you'll notice they use the curb cuts just like everyone else. Curb cuts are a great example of all people using an accessible design. Currently there are over 35,000 Homeowner Associations in California; one out of every four dwellings being built today is in a HOA development. This is a huge block of new homes, of which many are in adult communities. Californians can demand and pay for ramping of the front door. After the home is built and a need arises and a homeowner wants to make a ramp as a change to their home, it is denied by [the homeowners' association] as being an architectural design that is outside the guidelines. I am one of those people who are denied use of restrooms when visiting in people's homes because door frames are too narrow. I carry my own ramps because there is no accessibility. Sometimes I can use a back door -- otherwise I am limited to the yard. Humiliating? You bet your life it is!. My home was built with wider halls and doors, ramped entrances and exits; and though I have large bathrooms, they could have been better designed had I had some help with the design. This is one of the logical ideas that boggles the mind as to why hasn't it been adopted universally. Judy Guiraud Lincoln, CA - Wed, 15 Jun 2005 RE: ASL, the University, and The Wider Community by Cal Montgomery As I read your article about Brown's eliminating/reinstating their ASL program, I thought about my own experience. I am a middle-aged woman. Several years ago, as my divorce was about to be finalized, I decided it was either time to learn something or get back to the volunteering I'd been neglecting. I've been involved with the legal field all my life so, after reading an article about legal interpreters, I decided that might be an interesting choice. Off to Collin County Community College in Plano, Texas. This for-credit-only ASL program is headed by a hearing CODA (child of deaf adults), but all instructors, all lab people, etc are Deaf. I took a half dozen classes and a number of workshops. I learned some signing, a little Deaf Culture and certainly broadened my appreciation of the daily challenges Deaf people incur. Surprisingly, I also learned a lot about communicating in English (storytelling, word choices, face and body expression). Suffice it to say, I was in the half of the class that made the top half possible. Legal interpreting will never be my life's work. However, I learned more from that experience than a simple grade can convey and am an immensely better/richer person for the time and money spent. Is this not the purpose of higher education? Congratulations to Brown for reconsidering their stand on their ASL program. Joan Carr Dallas - Thu, 2 Jun 2005 RE: Sexism, handicappism: I agree with this article. What I find amazing is the lack of involvement of disabled people either as employees or consultants to all of the entrenched bureaucracy designed to provide services for the disabled. Perhaps this is why unemployment has not moved from 70% over the past 15 years. It is wonderful to have advocates but when I hear experts on employment for people with disabilities speak, I know in my heart that they do not understand, in fact, cannot truly understand what it means to live and work with a disability. I believe that the involvement and active recruitment of people with disabilities as consultants to companies making products for the disabled, to TV and movies about the disabled, to government agencies that are supposed to assist the disabled. I know there are folks there but they are still a minority. I am not advocating for a majority seat, but rather a level of participation, active, meaningful participation for the disabled. Unless, we engage the larger community in a broader discussion the system will continue as it is. It is less about revolution and resistance and more about transformation and participation. Barney Mayse - Fri 27 May 2005 RE: May 26 rally to protest cuts in Rehab Administration: While I firmly support funding for services to those of us who need it, I am not convinced we (VR & IL Centers) can prove that we are doing what we receive funding to do. In order to fight for these very important services we better be watertight on the services we provide. In corporate world they look at the bottom line - can we prove our bottom line? Brenda Kotewa Boise, ID - Thu 26 May 2005 RE: Thinking of camp this summer? I was a counselor in training at a similar camp a couple of years ago. The camp was run by the St Paul Jewish Community Center. Any child who was a member of the JCC was invited to participate. The camp was a outdoor day camp. Children with disabilities were placed in groups with other children their ages. All of the staff received basic training on how to treat children with disabilities. If necessary, people with extra training would also be part of the age groups. The only thing this camp lacked was that very few members of the administration and staff had a disability. Davita Petty St Paul, MN - Tue 10 May 2005 RE: Segregation and discrimination among the Boy Scouts: When I was a Boy Scout myself, about half a century ago in Germany, I and my wheelchair were welcomed most cordially, especially -- as I was told later -- because I provided the troop with the possibility to exercise that spirit of helpfulness towards everyone, which, according to Baden-Powell and Rudyard Kipling, is the very core of scouting ! Take it away -- what have you got left ? A horde of healthy, good-looking egotists! A society which opts for these -- thus confirming all the anti-American suspicions -- is welcome to them, but does certainly not have a future ! Baron Gotthard von Manteuffel Fürstenzell, Bavaria -Sat 21 May 2005 RE: Business strikes back: I really didn't think that busineses dragged their feet so much. But I can understand why they are reluctant to do the right thing and spend the $ if they don't have it. Small businesses are borderline profitable most of the time. Yet access is what's needed. I find a bigger problem, in my small world, is that my yacht club (of which I am a member) constantly blocks handicap parking with their events, though the city special events permit strictly prohibits this. yet the city refuses to act against the club. What can I do? Paul Gadbois Brea, CA - Thu 12 May 2005 RE: ASL, the University, and The Wider Community: I am a Brown graduate, class of 2001, who read of the defunding of ASL courses with some dismay. That being said, I believe some crucial facts were left out or glossed over when Ms. Montgomery wrote this article. All language programs that lead to an academic degree, from French to Japanese, are composed of at least seven classes in history, civilization, and culture, not including the language itself. The ASL "program" seems limited to only four classes, all on the language. What others were offered were so-called GISPs, or Group Independent Studies Projects, in which a small group of students selects an interested professor for a topic not covered by any department. It is an excellent opportunity to explore, but should a mechanism that permits classes on medieval weapons be the nucleus of an bachelor's degree? In my opinion, nothing is being "dismantled"; that would apply a greater level of organization and complexity than the program currently has. I am also puzzled as to why, in its ten-year history, the program seems not to have applied for or received any extramural funding from the NSF, the ADA, or other associations that would ordinarily leap at a program such as Brown's. Ms. Montgomery complains that the APC didn't give money to the ASL program, but there seems to be no evidence that the ASL program tried to supplement its meager reserves and gain popular acclaim either. Every department needs to do this to stay alive nowadays since most universities, Brown included, don't have the endowment to do everything they want to. This is something that the sciences take for granted but that the humanities usually ignore. Ms. Montgomery is likely not familiar with the Ethnic Studies concentration at Brown, only formalized as such in the last few years. It was transformed from an independent major to an official concentration after years of lobbying by students and professors alike, who had to all but prove that there was an interest by the students and a commitment from the faculty before it could be instituted. It's not a "fair" process, but it does send a message to the unversity that if it devotes funding and time to the department, it won't be wasting money until the department collapses from disinterest. It's lovely that 25 students a semester want to take ASL. Does that translate into even five students a year wanting to major in it? Does that mean that there are core faculty from several departments who want to support the major? Does that indicate that there are seven other classes that would supplement the major? From Brown's standpoint, and mine, it doesn't. It's not a lack of understanding that drives the administration. I can affirm their accomdation of disabled students of all types, including interpreters for a fast-paced genetics class, appropriate access for wheelchairs, and aid for those with mental illness. No, this is practicality. If I had a program that, in ten years, hadn't advanced beyond its inception with my help, why would I want to fund it for another ten years? Veronica Gross - Thu 12 May 2005 RE: A fight over image and tactics: For fifteen years I have advocated, begged , pleaded and tried to reason with various municipalities, businesses and individuals to respect and follow ADA guidelines and law. I have not been successful. I have reluctantly come to the conclusion that mass lawsuits and direct action are the only tools we have as activists to be anywhere near effective in implementing this law. The ablebodied community just does not care or regard the ADA as significant, That has to be obvious to anyone who has been paying attention since 1990. If the individual profits then so be it, but it is obvious to me that our only recourse at this point in time is to get into courtrooms across America and implement this law. This has gone on far too long. To quote Abbie Hoffman, "sue the bastards!" Enough is enough. Don Dawkins Sarasota, FL - Fri 6 May 2005 RE: A fight over image and tactics: Finally- someone who is clearly able to articulate something that makes sense about this issue. Thank you for defining the issues as they really are. Stephanie Albany, NY - Wed, 4 May 2005 RE: Liberals and Disability Rights - Why Don't They Get It? Thank you, Mary Johnson, for your article and the time that you put into researching it. As a "non-disabled" transgender leftist, I have to say that I have only begun to look into disabled communities and disabled rights. And I have to say that the comments made by people in response to your article are also thoughts that I have had about the transgender rights movement in terms of lack of transgender recognition by people in general and the lack of greater participation amongst transgender people in demanding our own rights. I would like to point out that the challenges faced by disabiled and the transgender people have some similarities, while also being distinct from each other. One issue is that of restrooms. Transgender people often cannot find safe public bathrooms to use due to harassment issues whereas many public facilities lack wheelchar accessible bathrooms (though other serious impediments, such as the lack of ramps or elevators, also exist for wheelchair users). Like disabled people, people with gender identities outside the generally-accepted ones of "woman" and "man" are also mislabeled by medical institutions. This article is the beginning of my own research and understanding of disability rights. If, in reading my comment, you are interested in learning more about transgender people, I can suggest the following websites for an introduction: http://www.survivorproject.org/basic.html and also http://www.firelily.com/gender/resources/who.html Sottolin Weng Oakland, CA - Sat, 30 Apr 2005 RE: No Guts, No Glory: Ingrid Tischer has said what I've been thinking since I became aware of Terri Schindler-Schiavo. I too, am a disabled woman who's been dealing with multiple sclerosis for nearly two decades. Even though the feminist movement left me years ago when they became rabid about abortion, I still kept hoping for some sign of outrage from NOW about the estranged "husband's" shabby and disgraceful treatment of the disabled wife ñ she was after all ñ a WOMAN. Wasn't NOW the group who fought so hard against men who brutalized their women? The only women's organization to say anything on Terri Schindler's behalf was Concerned Women for America, certainly not a militant rights group, but far more effective in that they spoke up! The so-called women's movement of the sixties and seventies, especially NOW, has become completely irrelevant. I think their inaction calls into question their usefulness to any women, much less disabled women. Tischer's correct ñ the silence of feminists is deafening. Perhaps they should be cognizant of the fact that "able-bodied" is, at best, a temporary condition. Karen August Pahrump, NV - Mon, 25 Apr 2005 RE: Whose movement is it, anyway? Montgomery's descent to ad hominem arguments lost me. Once she started doing this, I investigated her "facts" and found them to be (at best) questionable. J. T. Stocks Lansing, MI - Mon, 25 Apr 2005 RE: No Guts, No Glory: It's interesting that so many are shocked at the "progressive" and feminist disregard of the value of a disabled person's life while they are concurrently terrified of being labeled "pro-life." However, once we allowed ourselves to believe in the nonhumanity of the inconvenient unborn child within us, it was only a matter of time before the inconvenience - low "quality" - of the disabled life would cause progressives to argue for "death rights." Note that in both cases it is someone who is entrusted with the protection of the helpless (i.e., the unborn, the coma or "PVS" patient)-- their guardians, the judges, and civil rights advocates -- who are arguing that the one is not yet and the other no longer human, cannot feel pain, would not want to live. We're talking about the unborn child that is not viable without a life support system - who is? - and that would be born into unfortunate circumstances - such as disability(?) and the disabled or even "vegetative" person who must rely on technological support to survive. Once we allow ourselves to take on that kind of power over life and death for reasons of self-interest or squeamishness or inability to deal with suffering thinly disguised as humanitarian or libertarian or feminist assertion, we have to keep on upholding it in others or risk collapsing into a heap of guilt and depression. How do we go back? We have rebuilt our whole culture on the freedom from unwanted children, now it is ready to be free of unwanted disabled people like we are or may become, people(?) who cost money and time and trouble and make the average person, who would prefer to feel unlimited and immortal, feel just plain uncomfortable. The Nietszchean myth of the superman, the Darwinian concept of survival of the fittest, are so engrained in modern culture that we hardly recognize them when we see them. But if we don't fight the kind of arrogance that would make non-citizens of those who are not fully in possession of their bodily functions, then even the life that is left to us will not be worth living. Maria Combe Biloxi, MS - Mon, 18 Apr 2005 RE: Liberals and Disability Rights: I am a person with Cerebral Palsy. I am also a self advocate, right wing, pro life, pro disAbility rights kind of guy. As such I do not see anything wrong with either side trying to help people like Terri Schiavo. It is not a "right wing, left wing" thing. It is a human thing!!! I believe that this case is a wake-up call to all self advocates to never stop educating the public about our issues. No matter what kind of disability we have, our lives do have purpose and meaning regardless of disability Michael Tada Honolulu -Mon, 11 Apr 2005 RE: A sixth sense for discrimination: This article illustrates the frustration and effects of having a disability and 'knowing' that the interview is curtailed or avoided althogether once the disability is disclosed. What is more heart wrenching is the fact that the organizations illustrated have a mission to serve various populations of people with disabilities. One suggestion for the author would be to report her experience to the CEO, President, or Chairman of the organizations involved. An organization with a mission to serve people with disabilities is like any other, and may have a few people who have slipped through the cracks that do not reflect the policies, ideals, and values of who they work for. The leadership most often would be interested in hearing about a negative experience of someone such as Jenny. After all, if people don't communicate how will these secretaries, HR staff, etc., ever get the training they need? Jenny can not only be a self-advocate but an advocate for those who follow her. So yes, she should have requested an explanation and spoken to the woman's supervisor. She could have helped the organization to act according to their mission statement and then she would not feel discouraged or disappointed. I hope the author will keep us posted on her quest for that dream job! Greg McGrath North Olmstead, OH - Mon, 11 Apr 2005 RE: Liberals and disability rights: One of the problems we as people with disabilities seldom acknowledge is our lack of connectiveness to each other -- we have no community. That is why we become "family" from our shared life experiences. I strongly believe that neither side of the political spectrum connects with us; instead, they provide us the "crumbs of living." Why else would we as a so-called community put up with the blatant discrimination, marginalization and outright killing of our people? We feed off the political crumbs of our society as we struggle to survive, physically and emotiolnally, each and every day. We are forced to accept what our political and social system deems as "appropriate" -- such as: "special" education, or should we say planned ignorance; "supported" employment, or employment for abled-bodied supporters; forced institutional "living," despite abled and disabled protestations at every level; health care and living assistance that is tied mostly to living in poverty and "professionalized;" lack of overall access to most community amenities. I know these are broad generalities, but how else does one explain just this: the clamor for community living, but the lack of home and community-based service availability? It's what all segments of society seem to want. We have a broad, disability community philosophy that is generally accepted and supported. But we do not have a collective community of people that we can quickly identify with in our own living places, employment, schooling, socializing, worshiping. We are individual "islands in the stream" of life, and struggle to find connections. We are the means to financial ends for much of this country. Look at what amount of money does not flow into our community of people with disabilities: long-term services -- billions of dollars; assistive equipment -- billions of dollars; housing -- billions of dollars And the list goes on. We do not have control of our economic community, ADAPT organizer Bob Kafka would say, so we don't really have a true community. Our issues are truly great, and directly relate to the larger community and its ability to foster a system of justice toward all people; but our ability to affect the larger picture is still suspect as we continue to struggle with our place in the "struggle" for civil rights...for human rights...for the right to exist, to expand and to evolve. Currently, we seem to be in a real battle for the right to exist as a part of the human equation what with the pressure to be "cost effective," to go along to get along, to provide people with the "right" to die but not the services needed to live. As my old friend the late Wade Blank used to say, "disabled people are the cotton crop that is picked by the plantation owner." Liberals seemed to understand the "plantation" mentality when it came to color -- after a long, bitter struggle. Same with women and other folks. Conservatives just never really seemed to care, unless it is a charged moment in time! Jim Parker Sante Fe - Fri, 8 Apr 2005 RE: Articulating our perspective to progressives, by Josie Byzek: Josie Byzek's piece on progressives really hit home! I've been a progressive activist for more than 30 years and I was heartbroken by the responses from many progressives--even many of my closest friends. Even feminists did not see that she was being treated as her husband's chattel. The media's constant use of the term "persistent vegetative state," caused some of the problem. This made otherwise well-meaning people believe she was really dead and that it was a mercy to release her soul. As a medical editor, I understood that this was just a term used by doctors but that it was not necessarily descriptive of what might be going on inside her brain. Indeed, I realized that we do not have enough knowledge of human consciousness to be absolutely sure of what she was experiencing. Because Ms. Schiavo could not communicate, we could not determine her wishes. It was all hearsay and no progressive would ever accept that as a reason to put even a criminal to death. Yet, in this case, they accepted the hearsay based on their own horror about what it would be like to live in her condition. One nondisabled man even told me that I insulted people with disabilities by putting us in a category with Ms. Schiavo. Where is the insult? I can speak and get about but that doesn't give me more rights because I am more fortunate than she was. Any human being could be like her at any given moment. And that is what we all must face. Much as I deplore so many of the antilife decisions that George Bush and his cronies make routinely (war, cutting medical benefits, antilabor and antienvironmental policies, etc.), I feel it was correct to "err on the side of life,"in Ms. Schiavo's case even though the right did it to promote their own nasty agenda. I was aghast at the cowardly Democrats hiding behind legalisms and "states rights" excuses to score points against Bush instead of fighting about the merits of the case--even though I disagreed with their stance vehemently. There were no heros or heroines in this debacle--it became just a typical right-left struggle. And the disability spokespeople who expressed the nuances of the case were drowned out. I feel alienated toward the left and am now unwilling to demonstrate for causes any more unless they affect me personally. I have wasted a good deal of energy giving to a community that ultimately rejected people with disabilities. Now it's payback time! Yet, I could never be a rightist because so many of their decisions are so cruel to so many vulnerable people. It's time to end this right-left madness and take each issue on its own merits. If we have learned nothing else from this sad case, it is that we all must act to protect ourselves from being marginalized because we have disabilities. Ms. Billie M. Spaight Richmond Hill, NY - Wed. Apr 06 2005 RE: Articulating our perspective to progressives, by Josie Byzek: I think that, in the end, you must speak to any and all groups that will hear you, even if you worry that others will link you with groups who say "Life at Any Cost". I was rather surprised, however, that you have such faith in Michael Schiavo as a "stand-up guy"--I wonder if Terri would agree now, were she able to speak from the grave, her mind intact. His language has revealed his attitudes toward those whose "quality of life" just isn't good enough to warrant food and drink. In this he has a lot of company, since he's become the poster child for those on the left. It's so easy to say we'd rather be dead than disabled or extremely ill when we are far away from it (for examples of this attitude also among people of the religious right, see "My Mother and the Pope" at Buzzflash.com). Perhaps you weren't aware that Medicaid had already paid 18 months longer than planned for Terri's care, and that her husband (having accepted the million-dollar settlement, much of which was squandered on legal efforts to have her killed rather than to provide her with therapy, as agreed) was on the verge of having to pick up the tab ($5,000 per month) for her care at the hospice, on whose board his Right-to-Die lawyer sits. (Felos was also once in charge of the hospice, according to recent reports;the conflicts of interest in this case would be laughable, were they not so numerous, and so odious). I have been startled to find within my beloved progressive community a perhaps-undersandable cognitive and emotional glitch with practical and moral consequences for disabled people. I've been saddened by their knee-jerk stance against any legal or judicial intervention, borne of their disgust and fear re: the Bush administration's hypocrisy, which has led to a stance that could best be described as "Death at any Cost, if That's What the Judge--and Opinion Polls--Decree", a stance that echoes (of all people) Bill O'Reilly's repeated statements that he'd rather be dead than quadriplegic. True freedom means being heard even when your views depart from the party line. The harsh truth is that progressives can be as stubborn and as censorious as those on the right, as I have learned in the last weeks whenever I tried to speak up for Terri and those like her. For the first time, many of my articles on this subject were rejected. "Too divisive" was the rationale for keeping the dialogue lined up, single file, no dissenting views welcome. And this is what worries me about progressives on this issue: It's a done deal, no discussion required. Talk about defending the constitution and you'll sound like a great patriot. Talk about defending the life of a mentally disabled woman, and you sound like a "pro-lifer", and are treated like one. Thanks to national reactions following the killing of Terri Schiavo (yes, the killing; to deprive a quadriplegic of nourishment would be called killing, so where is the distinction?), I truly understood why pro-lifers sound so angry all the time--progressives won't give them or their concerns even a moment of consideration. This refusal to listen occurs because we fear they'll take the ball and run with it if we say for even a moment, "yes I do see what you mean on that point", and succeed in outlawing abortion. That's what it all comes down to: Protect people like Terri Schiavo and you'll align yourself with anti-choice groups; align yourself with anti-choice groups, and you'll be dismissed as a right-wing nut with no valid concerns. Something has shifted in the American psyche, and behind it is fear. Disability-rights activists must speak out with whomever they can, and continue to speak out as you have for discernment between the other positions of your respective groups, as well as the similarity that allows you to at least listen to one another. Right now progressives, I'm sad to say, simply aren't in the mood to listen because they've decided that "people like Terri should have their tubes pulled", as I overheard an emergency room nurse say heatedly last night, alarming nearby patients who must have wondered, as my mother did, how that kind of attitude might affect her own care--after all, my mother is very sick and old, and is taking up valuable time and resources... Dr. Teresa Whitehurst Watertown, PA - Wed. Apr 06 2005 RE: After Terri Schiavo: I wish so very much that Terri Schiavo's cause had been emphasized in the press as a disability issue, and not as a pro-life issue. This article showed why it was a disability issue. I have a profoundly autistic older brother who is now 57. What happened to Terri Schiavo scares the hell out of me. It terrifies me that some day in the future it may seem okay that my brother could go to the hospital with pneumonia, or a minor illness, and we be asked not to resuscitate him, or to not follow through with standard treatment. That Terri Schiavo's case may set a precedent for all disable is horrifying. I have been following this case with deep interest since October of 2003. While I did some writing to Governor Bush, maybe to a senator, signed a petition, I feel futile, I never felt I did enough. I am very interested in what Not Dead Yet is doing and hope to follow closely any progress they make in pushing their programn steps. I will continue to read the Ragged Edge as well. Thank you, not just for this article, but for following Terri Schiavo's case so closely and for reporting so accurately. Laurie McAllister Boise, ID - Sun, 3 Apr 2005 RE: After Terri Schiavo: i just wanted to say thanks for the article. I posted the link to it on my blog (http://www.pscap.org/billiesdiary). I've been exchanging messages with a group of friends, all with chronic illnesses, about how to approach nondisabled folks in our communities about Terri Schiavo and euthanasia. we're all active in radical communities dealing with a variety of issues and often interact with people who don't seem to "get" disability rights issues at all. which means we are constantly struggling just to participate in social justice movements that aren't accessible, or don't try to understand or appreciate the kinds of contributions that can be made by sick people. We often find ourselves locked out of events and organizing opportunities about issues we passionately care about. We've been sharing links and strategies about how to approach this issue with other radicals, and this article is a great source of information, as well as an articulation of a disability rights perspective on Terri Schiavo and euthanasia. Billie Rain Downer Grove, IL - Wed. Apr 06 2005 RE: After Terri Schiavo: : I followed with interest the story on Mrs. Schiavo and her husband's battle with her birth family. The issue of the birth family abuse which led to her death was ignored. The issue that bolemia was the cause of her death was all but ignored. The idea that she died and won a huge medical malpractice judgement was mostly ignored. The fact that she recieved medicare and medicaid support (which the Bush administration wants to cut back and would have led to her eventual demise anyway) was ignored. The fact that her parents got paid lots of money to keep her "alive" was ignored. What keeps amazing me is the fact that she was brain dead. Just because pieces of tissue still function 15 years after dying, does not mean it is "alive". The heart can beat and lungs can fill and expell without the concious brain being there. She was "flat lined" for more than 14 years! All of her tendons were cut because the muscles had atrophied. It is insane to keep people's tissue "alive" just because it "looks like they are trying to communicate". Dead bodies can sometimes react after death to various stimula. In my opinion, death comes when there is no more concious life. It does not come when you stop breathing or when the heart stops. Ask anyone who has recieved a heart, lung, kidney, cornea or whatever from someone who has died. Organs can continue functioning long after the donor is dead. If we hold that the breathing lung or the beating heart is the true signature of life, there will never be another organ transplant. Let's face it -- If the brain is dead -- the life is over. Brian Redine Portland, OR - Tue. Apr 05 2005 Re:Kansas group uses radio ads to target sheltered workshops: It is just as bad this side of the pond. I work in a factory making school furniture. All I get is National Minimum Wage. As a child I had Cataracts. It was only until recently that implants were available. To cut to the chase, most of the people I work with have "Challenging Behaviour." The charge hand has a severe mental illness and is always shouting and swearing at people. I am 51. During my younger days we had the 1946 Act of Parliament which meant that companies had to employ a certain quota, 2 percent of the workforce. These laws were never enforced. Now we have the Disability Discrimination Act, which is never properly enforced either. The sickening thing is that some previously non-disabled people will be coming back from Iraq, and they will be discharged on the grounds of their disabilities, and will never be properly employed again. Things are changing, but for the worse. Simon Arnall-Culliford Southampton, UK - Tue. Apr 05 2005 RE: Articulating our perspective to progressives, by Josie Byzek: Josie Byzek's article was quite helpful in putting the right to live or die in a resonable and moral perspective. Most people have a deep reverence for life and would opt to live under the most dire of circumstances. However, there are times when life under some circumstances can become either unberable or meaningless to the individual that it would be more merciful to allow that life to end. The problem arises when there is a dispute about what the incapacitated individual concerned really would like to have happen at the time of decision. None of us really knows what we would want done on our behalf should we find ourselves incapacited to the point where we can't express our our wishes. The best that I can come up with while being of sound mind and body is to write out a clear advanced directive with a letter of instruction and appoint a trusted friend, spouse, offspring with power of health attorney to make the final decision based on the facts on hand. It would be wise to have at least two trusted persons involved in the decision, with one person having no financial interest in the outcome. If a dispute arises, then a third party acceptable to both sides shoud be sought to mediate a final decision, taking into consideration the philosophical beliefs of the individual involved and the medical prognosis. In all cases where termination of life is the desired outcome, the incapacitated individual shoud be transfered to his/her home or a hospice for palliative care with nutrition and hydration provided. If at some point in time, to be determined by the parties involved, they deem it desireable to cause termination of life, then an appeal should be made to the courts for permission to end life by lethal injection rather than slow starvation and dehydration. All this should be done in privacy with maximum respect for the gravity of the situation. There are no easy solutions, in any case. My beloved wife died of toxic shock in a local hospital about two years ago. She had signed an advance directive and appointed me as her health power of attorney, She was 82 years of age, in fair physical health and suffering from moderate dementia. She was mobile, in good spirits and was fully aware of herself and her surroundings. She had contracted a candida infection in her throat and was unable to swallow food or water. I had to admit her to the hospital for IV management of water and nutrition, While she was undergoing relatively minor treatment, she becoame infected with other pathogens present in the hospital and her white blood cell count rose to serious levels. The hospital cound not identify the offending infection so they started to probe for internal bleeding by preparing her for a colonoscopy. The sress of that proceedure caused her heart to stop in the middle of the night. I was constantly present with her during the stay at the hospital. I was so alarmed that she was dying for the wrong reasons due in inappropriate treatment that I rescinded all advance directives, and demanded immediate resuscitation. What happened afterward was a nightmare. The doctors could not start her breathing, so they cut her open on a makeshift operating table to inject adrenaline directly ito the jugular vein. After about 15 minutes, she revived for a few seconds and then her heart stopped again. This time they rushed her to intensive care and for the second time after another 15-minute lapse of time, they got her heart beating again and had her on a mechanical breathing device. The encephalagram showed no brain function and the prognosis was that she could not be kept alive without massive intervention and she would have no conscious function. I was left with the awesome decision as to what I wanted the medical establishment to do. After some deliberation, surrounded by friends and caring professionals, I ordered the hospital personnel to remove all means of artificial life support. She was unconscious and she died in my arms. It was the toughest ordeal of my life. I loved her. She trusted me unconditionally. I believe I made the right decision. I still grieve at the state of medicine in our country, although in extremis, all medical personnel did their level best to save her. However, I reget that I did not have the foresight to hire a private nurse at home to administer intravenal feeding and let the initial infection run its natural course. She is resting peacefully now and I am recovering from the experience. Hank Preiser Annapolis, MD - Mon Apr 04 2005 RE: Articulating our perspective to progressives, by Josie Byzek: As the debate on the Terri Schiavo case rages on even after her death, I'm forced to reassess who I consider to be my friends. All those mentioned in this letter fully know my status as a disabled person. They all know that I have dealt with multiple sclerosis for years and that I need a power wheelchair to function outside my home. There is an undeniable difference between conservatives and progressives. Those who claim to be progressive have made up their minds that Terri Schiavo's life is not worth living, case closed. Her loving husband has decided and that is good enough for them!! They have no desire to explore the back story. Meanwhile, conservative friends are wondering why her "husband" was given guardianship over her when he has gone on with a new woman and produced children with her. Is he honoring his wedding vows? The progressives say "she's suffered enough, let her go in peace." The conservatives say, "it's cruelty to starve your dog to death. It's illegal, how can they do it to her?" The progressives think it's horrible to allow thousands of little third-world children to suffer the agony of starvation while Ms. Schiavo starves in their living rooms. The conservatives send their money to family charity organizations both at home and abroad and suffer seeing Terri's mother plead for her daughter's life. The progressives are angry that anyone wants Scott Peterson to suffer a death penalty, meanwhile he has habeus corpus review of his trial. Conservatives are angry that Ms. Schiavo has never even had her own attorney! Progressives are angry that those pesky Republicans are trying to usurp the honorable Florida judge. Conservatives are angry the Florida judge has made rulings that ignore testimony from people who dispute the "facts," the sincerity of the estranged husband guardian, the euthanasia attorney Felos and the media who out-shout anyone who raises questions. Conservatives are also astonished that Jesse Jackson, Ralph Nader, Tom Harken and Nat Hentoff, all well-known progressives have sided with Terri. If it's all the same to you, I'd rather have my fate decided by a conservative than a progressive who refuses to be confused by the facts. I'm on record that I NEVER want to be starved to death! Period! Karen August Pahrump NV - Mon Apr 04 2005 RE: Articulating our perspective to progressives, by Josie Byzek: It is with some relief that I read Josie Byzek's article. Most of the output from Ragged Edge and Not Yet Dead during the Schiavo episode has been so offensive that I was close to refusing to read any more material from those sources. Byzek's piece reminded me that there are disability activists who are honest and fair-minded. Unlike some other disabled persons publishing material about the issues in the Schiavo situation, she is not just a conduit for propaganda from the Right to Life movement. Her independence allows her to question Congress' and the president''s unconstitutional intervention in the legal case and treat the medical evidence with the respect it deserves. Among the hysterical screaming headlines on the topic, falsely claiming Ms. Schiavo was murdered, Byzek's well-reasoned message is all the more commendable. I do wonder why Ms. Byzek belongs to Not Dead Yet. The group's extremism is alienating. I suspect it does more harm than good. For example, its call for a moratorium on removing feeding tubes from persistent vegetative state patients usurps the rights of those patients. Its attacks on guardians insult much of population since we are the people who will become guardians if catastrophe occurs. (Coleman wrote that the disabled are Terri Schiavo. Though that isn't true because of the degree of Ms. Schiavo's injury, members of the general public really are Michael Schiavo -- potential or real guardians. When you insult them, you insult us.) Perhaps someone needs to form a disability rights group that will not shame itself by doing things like aiding and abetting the likes of Randall Terry as, as NYD did, but is less conservative than more staid traditional organizations. Jemima Gaines Seattle - Mon Apr 04 2005 RE: Disability groups seek legal protection for 'incapacitated' people: Mary Johnson's article on seeking legal protection for incapacitated people is the most succint review of the disability rights perspective I have read in the Terri Schiavo case.  This June will mark the 30th anniversary of the founding of the Atlantis Community in Denver, Colorado.  My fiance, Mike Smith, was one of the first people to move out of a nursing home into his own apartment.  He was in the final stages of Duchennes Muscular Dystrophy and could no longer sit up.  He collapsed and went into a coma after testifying to Judge Richard Matsch about the living hell he endured in that institution.  When I walked into his bedroom, I was told he wasn't getting enough oxygen to the brain to survive much longer.  I took one look at him and knew he wasn't done yet.  He woke up three weeks later.  I spent 6 days a week 8 hours a day by his side, cooking for him, feeding him, bathing him, reading to him and holding the phone to his ear.  Shortly after I left for my last year of college, he went into a coma again.  The Reverend Wade Blank slept on the floor by his bed those last weeks.  No one ever considered removing his oxygen tube or withdrawing any form of sustanence even when we all knew the end was near.  It would have been blasphemy.  This year more than ever, I feel like I'm fighting the same battle over again.  Thanks for carrying the torch. Kristen Castor Pueblo, CO - Mon, 4 Apr 2005 RE: Does Blind Justice Do Justice to Blind People?: I am blind and an officer in our local chapter of the National Federation of the Blind. I find the show "Blind Justice" to be realistic on an almost surreal level. Each episode is like a week of my life condensed into a single hour. Like the lead character, I have had people ask if I needed my meat cut for me. And we recently addressed the gun issue at the state level. I have fired a 357 mag. and a Beretta 9mm, and, as a blind individual, I can tell you that sound is every bit as accurate for aiming as sight is at close range, about 20 feet or less. Losing my eysight actually improved my accuracy at that range over when I was sighted. In one relatively comical event, I was cleaning my desktop with a spray bottle while arguing with a co-worker over this very issue. As the individual elaborated on my inadequacies, I stealthily adjusted my sprayer to the stream position. I then turned and painted a "x" in the middle of his chest. He saw the point immediately: If that had been a gun, he would be dead now. The only thing I find a stretch about the show is that it tries to present a common misconception as fact. The other senses of a blind person do not improve as sight fades; we simply pay more attention to them. It would be refreshing to hear one of the blind cop's colleagues say, "now that you mention it, I smell that too!" If ABC will actually consult with some working blind professionals, this show has the potential to do some real good in the lives of the blind. Warren McClendon Lexington, KY - Mon, 4 Apr 2005 Add your comments. Read more letters.