tag:blogger.com,1999:blog-22878815.post3255409387174553079..comments2023-10-21T06:18:41.537-05:00Comments on Fighting Monsters with Rubber Swords: Quality of LifeRobert Hudsonhttp://www.blogger.com/profile/15462451435441751837noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-22878815.post-81122670397896883682007-01-21T01:48:00.000-06:002007-01-21T01:48:00.000-06:00Sometimes I'm glad I live in Australia.
A darlin...Sometimes I'm glad I live in Australia. <br /><br />A darling little girl I worked with died recently, after her third liver transplant rejected. She was a Special School student (ie intellectually disabled) and both of her parents would have a hard time hitting 100 on an IQ test. Neither of them had private health insurance, or a job. <br /><br />I'm really proud that the medical staff in our public health system tried so hard (despite their truly appalling funding) to give her a chance at a quality, happy life. <br /><br />She was an absolute joy of a kid.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-88067608591776100592007-01-10T19:24:00.000-06:002007-01-10T19:24:00.000-06:00that is HEART WRENCHING!!!!!!!! I'm soooo angry/sa...that is HEART WRENCHING!!!!!!!! I'm soooo angry/sad/mad/confused.. Perhaps someone? could help her? people "SWAP" medical needs now-a-days... AND organs EEEK! I'd give her mine BUT my son is 9 w/the type 1 beedies & MY daughter IS retarded.. I might need to give it up later UGH!!! :) FUCK THE INSURANCE COMPANIES . ps my daughter had that test. I love this blog - its real. thanx.Dawnhttps://www.blogger.com/profile/01706946264431007643noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-66938033300783932632007-01-03T20:39:00.000-06:002007-01-03T20:39:00.000-06:00There are tests of nonverbal intelligence that are...There are tests of nonverbal intelligence that are given to children who can't speak English or who have communication disorders: the TONI (test of nonverbal intelligence) is one of them. There's also the Leiter and the Ravens Matrices (not sure if that one is for kids--I know the TONI is). <br /><br />My kid's IQ has varied by as much as 31 points. I think all these tests are absolute horseshit, and I thoroughly recommend Stephen Jay Gould's _The Mismeasure of Man_.emilyhttps://www.blogger.com/profile/11297777521281861126noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-56121188732752039012007-01-01T00:31:00.000-06:002007-01-01T00:31:00.000-06:00Pete Rose is the famous alcoholic with the liver t...Pete Rose is the famous alcoholic with the liver transplant that came to my mind, and I remember being outraged at the time.Nightfallhttps://www.blogger.com/profile/00711282713939330974noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-87310904198173721022006-12-27T11:17:00.000-06:002006-12-27T11:17:00.000-06:00Please don't believe that what is happening in Okl...Please don't believe that what is happening in Oklahoma is the same thing that happens in other states. In Indiana, I have personally taken care of kidney transplant patients who were developmentally disabled, deaf, and had a variety of other disabilities. There was even one little girl who couldn't speak because of brain injury, so she used sign language -- I hope by now she's got a BBOW!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-15617366300580048482006-12-26T12:37:00.000-06:002006-12-26T12:37:00.000-06:00Not to hijack the comments page, but JOOC, how do ...Not to hijack the comments page, but JOOC, how do they test the IQ of kids that age, especially if they can't say their answers? I know there are "culture fair" IQ tests that require a person only to identify and complete complicated patterns, without even having to be able to read or write a certain language, but I think those are only for adults. What do they look for in a kid that young?How do you know I'm not Liddy Wales?https://www.blogger.com/profile/05785984916762480956noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-3511678686642407312006-12-26T10:54:00.000-06:002006-12-26T10:54:00.000-06:00I agree, Rob. The tattoo analogy is perfect. My hu...I agree, Rob. The tattoo analogy is perfect. My husband may have passed a genetic defect to our children. We have to strike a delicate balance between managing their health care and permanently "tattooing" them with the diagnosis.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-39627652666377561502006-12-25T20:55:00.000-06:002006-12-25T20:55:00.000-06:00But that's the thing. We're not hesitant because ...But that's the thing. We're not hesitant because we think she might be retarded, we're hesitant because IQ testing for non-verbal children is so subjective. But when that test result comes back, it's like a tattoo. It's never going away.Robert Hudsonhttps://www.blogger.com/profile/15462451435441751837noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-72138468047409046172006-12-25T20:48:00.000-06:002006-12-25T20:48:00.000-06:00Maybe an IQ test in the next few years wouldn't be...Maybe an IQ test in the next few years wouldn't be such a bad idea, especially if it can be shown that, as it appears from your writing, Schuyler has a roughly normal level of intelligence. It might be good to have something official on paper that says she's not mentally retarded, so she never has to end up in the same situation as this poor Cargill woman.How do you know I'm not Liddy Wales?https://www.blogger.com/profile/05785984916762480956noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-64726441309473009682006-12-25T16:10:00.000-06:002006-12-25T16:10:00.000-06:00Thanks for this post, Rob. I was listening to the ...Thanks for this post, Rob. I was listening to the story while I was driving too, but I only had time to catch the middle, and I missed why she was denied the transplant. How incredibly... disgusting. I don't understand this world of ours, but I'm grateful that people like you, and like Misty, share your stories.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-77343629912993620132006-12-24T11:54:00.000-06:002006-12-24T11:54:00.000-06:00Nah, I'll never doubt it because I'm one of those ...Nah, I'll never doubt it because I'm one of those "broken" people. I wonder if doctors discriminate deaf people for transplants... Nevertheless, no one should be discriminated against. Each life should be valued.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-24393368166252972392006-12-24T10:16:00.000-06:002006-12-24T10:16:00.000-06:00Yeah, at first Larry Hagman came to mind, then Dav...Yeah, at first Larry Hagman came to mind, then David Crosby & Pat Summerall, the list goes on for the rich and famous (not all of them wrecked thier own organ, I know) For Misty to be flat out denied is wrong on so many levels. I would so very much like to voice my opinion to someone who could try to change this for her, but my imagination is rather limited as to what/who could help!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-50252880793287364572006-12-24T09:56:00.000-06:002006-12-24T09:56:00.000-06:00Schuyler's monster in the outside world seems wors...Schuyler's monster in the outside world seems worse than the monster inside her. "The world" will _keep_ her down, even when her personal monster won't.<br /><br />Our daughter also has broken brain, but physically, she's perfectly healthy. The discrimination she will face in later years is devastating.Unknownhttps://www.blogger.com/profile/09879209766689225872noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-10744758286288049602006-12-24T09:24:00.000-06:002006-12-24T09:24:00.000-06:00Here's another celebrity who abused himself into a...Here's another celebrity who abused himself into a liver recipient and then went on to be an even more famous sperm donor- David Crosby.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-21094297328696040342006-12-24T06:34:00.000-06:002006-12-24T06:34:00.000-06:00the bad part is, so many people in the world are "...the bad part is, so many people in the world are "broken" - it has a varied definition. And so many of the "retards" are kind, decent people, while so many of the "normal" ones are complete assholes. I'd much rather keep a retard around than a lot of other people. How stupid, and infuriating.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-30588873217961481662006-12-24T00:43:00.000-06:002006-12-24T00:43:00.000-06:00wonder if Oprah has heard of this one.wonder if Oprah has heard of this one.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-40805452542542320022006-12-24T00:41:00.000-06:002006-12-24T00:41:00.000-06:00Are you freaking kidding me? I try very hard to re...Are you freaking kidding me? I try very hard to respond to myths about organ donation and transplant that are perpetuated on television, and most of them come down to a frank assertion that we need to have faith that the medical world is keenly aware of the ethical issues surrounding donation and transplant, and that they have worked very hard to set up an independent governing body that addresses issues like conflict of interest and preferential treatment. <br /><br />Then along comes some real-life story of sheer dumbassiness like this. Good Lord.<br /><br />Let me point out that, of course, keeping up with all the med's that are required to keep a transplanted organ happy is no small task. Annika's schedule is complicated enough that it throws me for a loop some days. Still, that's what pill cases are for, right? Once a week, the thing gets filled and, zoom, off you go. <br /><br />From what you describe, this objection doesn't sound like it applies to her at all. In fact, with help, I'm not sure who, exactly, it applies to. By far the highest incidence of non-compliance with anti-rejection med's are teenagers. So this is probably not an approach anyone would care to push too far, eh?<br /><br />Off to do some more reading. I'm steaming.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-72938427077821915362006-12-23T22:05:00.000-06:002006-12-23T22:05:00.000-06:00I was thinking of Larry Hagman, actually. Am I mis...<i>I was thinking of Larry Hagman, actually. Am I mistaken?</i><br /><br />Whoops, I forgot about him. You aren't wrong. He is yet another celebrity alcoholic who got a liver transplant very quickly after being put on the list. I don't remember as many specifics on Larry Hagman's situation, though I do recall him saying openly that booze rotted his liver and that he did continue to have a drink once in a while after his transplant. I don't know how big a deal that would be for anyone else, but for an admitted alcoholic and AA member, I would think it would be a very, very bad decision. <br /><br />~MaryQueen of Arkansashttps://www.blogger.com/profile/11416613850810383584noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-36222916565215818452006-12-23T21:48:00.000-06:002006-12-23T21:48:00.000-06:00Rahnee, it was Mickey Mantle who got the liver tra...<i>Rahnee, it was Mickey Mantle who got the liver transplant.</i><br /><br />I was thinking of Larry Hagman, actually. Am I mistaken?Robert Hudsonhttps://www.blogger.com/profile/15462451435441751837noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-207458907382179922006-12-23T21:37:00.000-06:002006-12-23T21:37:00.000-06:00Damn right, Rob.
In a similar vein, the Terry Sch...Damn right, Rob.<br /><br />In a similar vein, the Terry Schiavo case still haunts me. My son is at a very similar level of functionality as she was. The main difference between the two of them is that he is a cute (though I may be biased) child while she was a grown adult, no longer cute and cuddly.<br /><br />Granted, there were questions of her prior wishes being met, but that wasn't the whole story. I heard people I knew - people who hear about Ethan on a regular basis - saying "Yeah, but they should put her out of her misery. What kind of life is that to live?"<br /><br />While our son is still a child, he's got us to protect him, and the outside world isn't quite as threatened by him. But when he's a grown adult who still functions at a 6 month old level, who needs constant care and attention... what will the world think his quality of life is? Even when he laughs and smiles a thousand times a day? More than any of his medical issues, I'm afraid for his future, and wonder if he'll be valued as a human being.<br /><br />The saddest part of this story to me is that Misty is nearly "normal" by society's standards. If she were moderately or severely disabled, this probably would have never have made the press.Metehttps://www.blogger.com/profile/07276808432623125931noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-31584438138241795652006-12-23T21:26:00.000-06:002006-12-23T21:26:00.000-06:00Kathleen said...
I do "get you" Rob. More than you...<i>Kathleen said...<br />I do "get you" Rob. More than you will ever know.<br />However, it is common knowlege that the word "retard" is heavily embroiled in our generations' vocabulary, along with "moron", "mongo(loid)", "idiot" and also the terms "shut up" and a few other equally rude ways people address eachother.<br />I was just hopin' you would get ME.</i><br /><br />Then let me spell it out. Yes, I was being sarcastic. Shocking, I know.<br /><br />-----<br /><br /><i>Shannon and Carey said...<br />Hi Rob. Although I dont know the full story/history on Misty I am thinking that Misty could obtain a guardian and then the guardian could sign the release? Maybe this is an idea? Her CM should know. </i><br /><br />Funny you should mention that. From the NPR story:<br /><br />"But Cargill was getting more worried. So they asked the county department of Adult Protective Services to be her legal guardian. Officials there reviewed her case and declined, saying she's competent to make her own decisions."Robert Hudsonhttps://www.blogger.com/profile/15462451435441751837noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-25470069389761721102006-12-23T19:20:00.000-06:002006-12-23T19:20:00.000-06:00A society that refuses to take care of its needies...A society that refuses to take care of its neediest members doesn't deserve to call itself civilized.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22878815.post-63294765606546798132006-12-23T19:08:00.000-06:002006-12-23T19:08:00.000-06:00Start the discourse and make it loud - once the vo...Start the discourse and make it loud - once the voice of objection is loud enough, there may be change. I use several films on developmental delay and diability in my college classroom to get the conversation started. According to my students, the most eye opening is The Lynchberg Story which recounts the last American residential facility that performed forced sterilizations on residents with low IQs. Man...time to get loud!Anonymoushttps://www.blogger.com/profile/02850027974121046021noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-12046333903815124672006-12-23T16:34:00.000-06:002006-12-23T16:34:00.000-06:00Rahnee, it was Mickey Mantle who got the liver tra...Rahnee, it was Mickey Mantle who got the liver transplant. He had a cancerous tumor on his liver which could have been removed had he not done so much damage to himself by drinking so much for so many years. As it was, his liver so far gone that just removing the tumor wasn't an option, so yes, he got a liver. I, too, thought of this situation right away when I read Rob's post. <br /><br />That Misty, who sounds perfectly able to cope with the surgery, is being denied a kidney due to something that is no fault of her own has made so angry and sad that I hardly know how to express it. <br /><br />Does anybody know if this has made the national news? Anybody have a connection at CNN? This sounds like something that Anderson Cooper would be all over if he knew about it.<br /><br />~MaryQueen of Arkansashttps://www.blogger.com/profile/11416613850810383584noreply@blogger.comtag:blogger.com,1999:blog-22878815.post-72542379676373799932006-12-23T16:06:00.000-06:002006-12-23T16:06:00.000-06:00I'd bet the ones who say the class is a "drain on ...I'd bet the ones who say the class is a "drain on the resources" of the school are the same ones that need the $18 MILLION dollar football stadium at the high school.Anonymousnoreply@blogger.com