tag:blogger.com,1999:blog-42780155617520162632024-03-13T23:41:49.419-04:00Water on the Brain - and Lots on My MindStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-4278015561752016263.post-57344908732562456712010-03-12T16:23:00.003-05:002010-03-12T16:43:45.119-05:00Happy Correction: Intern. Fed. for Spina Bifida and Hydrocephalus Are Active Opponents of InfanticideThe day after I posted the last blog entry, I received a friend request and a message from Renée Jopp, who works with the <a href="http://www.ifglobal.org/">International Federation for Spina Bifida and Hydrocephalus (IFSBH)</a>.<br /><br />His note was friendly and reminded me of something I should have already known. It's not true that <span style="font-style: italic;">all</span> advocacy organizations associated with hydrocephalus and spina bifida have ignored the issue of infanticide.<br /><br />That may be a uniquely American characteristic, but I don't know for sure.<br /><br />To the point, the IFSBH has a strong position paper on the Dutch infanticide program. I wasn't asked to do a correction or to share that information.<br /><br />I'm correcting myself and sharing this because it's the right thing to do. I wish all my screw-ups were ones that resulted in happy corrections like this one.<br /><br /><a href="http://www.ifglobal.org/en/termination-of-life-groningen-protocol.html">This link</a> contains a summary of the organization's activities in terms of opposing euthanasia of newborns with spina bifida and hydrocephalus:<br /><blockquote>BOSK, IF's Dutch member organisation, wrote a letter to the Dutch government opposing against the <i>Groningen Protocol</i> and the proposal to institute a specific committee to judge if doctors handled carefully. To read the English translation of this letter, click <a href="http://www.ifglobal.org/images/stories/humanrights/bosk%20voor%20website.doc" class="jce_file" title="here" target="_blank"><img src="http://www.ifglobal.org/mambots/editors/jce/jscripts/tiny_mce/plugins/filemanager/images/ext/doc_small.gif" alt="doc" title="doc" border="0" /> here</a>. <div align="left"><br />IF also wrote a <a href="http://www.ifglobal.org/images/stories/humanrights/if%20resolution%20on%20the%20right%20to%20live%202006.pdf" class="jce_file" title="resolution on Active Termination of Life of Newborn Children with Spina Bifida and/or Hydrocephalus and the Right to Live" target="_blank"><img src="http://www.ifglobal.org/mambots/editors/jce/jscripts/tiny_mce/plugins/filemanager/images/ext/pdf_small.gif" alt="pdf" title="pdf" border="0" /> resolution on Active Termination of Life of Newborn Children with Spina Bifida and/or Hydrocephalus and the Right to Live</a>. This document was unanimously adopted by IF's Annual General Meeting on 30 June 2006 in Helsinki. </div> <div align="left"><br />At the same time, IF took the lead in drafting an EDF resolution on this matter concerning newborn children with all sort of disabilities. The <a href="http://www.ifglobal.org/images/stories/humanrights/edf%20resolution%20right%20to%20live%2006.pdf" class="jce_file" title="EDF resolution on Active Termination of Life of Infants with Impairments and the Right to Live" target="_blank"><img src="http://www.ifglobal.org/mambots/editors/jce/jscripts/tiny_mce/plugins/filemanager/images/ext/pdf_small.gif" alt="pdf" title="pdf" border="0" /> EDF resolution on Active Termination of Life of Infants with Impairments and the Right to Live</a> was adopted by the EDF Annual General Assembly in May 2006. </div> <div align="left"><br />The right to live is also specifically stated in the <a href="http://www.ifglobal.org/images/stories/humanrights/un%20disability%20convention%20en.pdf" class="jce_file" title="UN Disability Convention" target="_blank"><img src="http://www.ifglobal.org/mambots/editors/jce/jscripts/tiny_mce/plugins/filemanager/images/ext/pdf_small.gif" alt="pdf" title="pdf" border="0" /> UN Disability Convention</a> which was adopted in December 2006. </div> <div align="left"> </div> <div align="left"> In 2009 public interest lawyer James E. Wilkinson spent his summer working as an IF volunteer, researching international human rights arguments against euthanasia of children born with severe disabilities. The <a href="http://www.ifglobal.org/images/stories/groningen-d.pdf" class="jce_file" title="IF Position Paper on the Groningen Protocol" target="_blank">IF Position Paper on the Groningen Protocol</a> examines the key factor for the Protocol and similar decision-making, the anticipated “quality of life” for an infant with impairments. The paper concludes that practices, like the Groningen Protocol, that counsel parents that it is best for babies to die because they have severe impairments, violate international human rights standards. </div> <div align="left"> </div> In January 2010 Dutch paediatricians suggested to extend the Groningen Protocol with the criterion "future unbearable suffering". They claim that newborns are now dying of starvation, because doctors fear prosecution when they end the life of a newborn with severe disabilities who is not suffering at birth, but will be in the near future. Both BOSK and IF both responded with press releases. Read the article that was published in the Belgium weekly <a href="http://www.ifglobal.org/en/stereotypes-kill-babies-with-severe-handicaps.html" title="Stereotypes kill babies with severe handicaps" target="_self">Tertio</a>.<br /></blockquote>Most of the organization's material is in pdf format - I'll see if I can get excerpts from some of the documents posted here at a later date. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com4tag:blogger.com,1999:blog-4278015561752016263.post-56867734289766965072010-03-09T11:32:00.006-05:002010-03-09T14:24:12.591-05:00Selecting Kids with Spina Bifida and Hydrocephalus for Death - Oklahoma, 1977-1982By now, my lapses in posting to this blog are so predictable that probably apologies are unnecessary. Any attempt would be met with some justifiable scepticism by anyone who has checked the blog from time to time. Apologies usually carry a suggestion one will improve one's past performance - I know better than to offer such promises.<br /><br />Even today's posting is something of a cheat. I am using this blog as something I can link to on the NDY blog, where I'll be writing about some current suggestions that euthanasia of some children should be legalized. The reasoning is that - since some parents are requesting it and some doctors are doing it - we should make it legal. Somehow, it is reasoned, this will make the practice more open and safeguarded than it is now.<br /><br />This is not a new argument. Over the past 80 years or so, people with hydrocephalus - especially children - have featured prominently in discussions of what lives are worthy of the medical efforts expended to keep us alive. In fact, when doctors in the Netherlands announced a new "protocol" for killing "seriously ill" infants, all of the babies listed who had been killed had spina bifida and hydrocephalus.<br /><br />This seems to be a taboo topic at hydrocephalus conferences - spina bifida conferences, too. I am not sure how to explain it. Some of it could be some sort of unacknowledged survival guilt, perhaps. It could also be that many of the organizations "advocating" for people with spina bifida and/or hydrocephalus are dominated by parents and medical professionals. Perhaps it's taboo because some parents have conflicted feelings on the subject of ending the lives of disabled infants. And medical professionals don't ever enjoy criticism of their profession - even if they themselves object to the viewpoints and practices under attack.<br /><br />Below is a very important chapter in the social, legal and medical history of hydrocephalus and spina bifida. It's a shameful and long episode from a hospital in Oklahoma.<br /><br />And while this story is pretty well-known in the disability rights community, you'd be very hard pressed to find a discussion of it in a bioethics textbook.<br /><br />Enough from me - here's the article as it appeared when I posted it online over ten years ago:<br /><br /><br />This article is taken from <span style="font-style: italic;">The Disability Rag and ReSource</span> vol 15 no. 1 (Jan/Feb) 1994 (pp. 16-18). Advocado Press: Louisville, KY. It is reproduced here with the permission of <a href="http://www.advocadopress.org/">Advocado Press</a> and the author. (During its 16-year run of publication, it was also titled "The Disability Rag" and "The Ragged Edge" at different times.) The online archives of "The Ragged Edge" can be found at: <a href="http://www.ragged-edge-mag.com/">http://www.ragged-edge-mag.com/</a>.<br /><br /><br /><span style="font-weight: bold;"></span><blockquote><span style="font-weight: bold;">It </span><span style="font-weight: bold; font-style: italic;">Can</span><span style="font-weight: bold;"> Happen Here</span><br />by John R. Woodward<br /><br /><span style="font-style: italic;">American doctors once conducted an experiment that proved you can kill the disabled babies of poor families and get away with it. Their research was funded by the Federal Government. Twenty-four babies with spina bifida lost their lives.</span><br /><br /><span style="font-style: italic;">The experiment was declared a success. Yes, it <span style="font-weight: bold;">can</span> happen here.</span><br /><br />Between 1977 and 1982, four doctors and a social worker at the Children's Hospital of Oklahoma, in Oklahoma City, monitored the births of babies with myelomeningocele (the medical term for spina bifida). Parents who were poor were told that it would not be appropriate to treat their baby and given an extremely pessimistic picture of their child's future life. Parents from better-off families were told more about the treatments for spina bifida and given more optimistic - and more accurate - information about their child's potential.<br /><br />None of the parents knew they were part of an experiment. Parents who were assigned to the "pessimistic outcome" group chose, by a factor of nearly five to one, not to have their babies treated. The experiment was not conducted to prove that babies with spina bifida will die if they are not treated. Doctors already knew that. The goal of the experiment was to prove that the families would accept a "do-not-treat" recommendation from their doctors.<br /><br />It was no coincidence that the babies who died were the children of poor parents. To select the families for the "pessimistic outcome group," the doctors conducting the study developed a "formula" which they published as part of their write-up in <span style="font-style: italic;">Pediatrics</span>, the most famous and influential medical journal devoted to the care of children. This is their "formula": Quality of Life = Natural Endowment by the contribution of the Home plus the contribution of Society. In a more mathematical style it reads: QL = NE * (H + S). The doctors measured the "H" - the contribution of the home - primarily in financial terms: family income, family debt, employment and employability of the parents, etc. The parents' "intellectual resources," defined in terms of their educational level, were also included in the calculation of "H," which had the effect of crowding the pessimistic outcome group with parents less likely to challenge the doctors' "facts". Since "Natural Endowment" is multiplied by the other factors, rather than added to them, babies with a greater level of impairment (and hence less "natural endowment") were more likely to be placed in the "pessimistic outcome" group.<br /><br />The "formula" used non-medical factors to decide which babies ought to receive treatment, which should be a medical decision. The use of a mathematical procedure to create the appearance of an empirical foundation for the decision not to treat is not science. It's "scientism," the dressing up of a moral prejudice in the language and trappings of science, so as to lend a false credibility to a value judgment that would otherwise be more readily exposed as a mere prejudice. In this case, the doctors arbitrarily assumed that poor families offered a quality of life so much lower than that of middle- class and wealthy families that babies born into them were better off dead.<br /><br />Frieda Smith, who gave birth to Stonewall Jackson Smith in 1979, remembers being confronted by a doctor just days after a difficult birth, before she had time to come to terms with her baby's birth impairment.<br /><br />"He (the doctor) told me that I would always have to take care of him, that he would be blind, that he would never know me, that he was more like some kind of animal than a human being," she says. "He never really sat down with me and explained what the operation would do for Stoney." Ms. Smith was never told that the failure rate for spina bifida treatments is very low, nor did she understand that the operation would reduce the degree of sensory, mobility and intellectual impairment that her son experienced. "He made it sound like Stoney would live longer, but he wouldn't ever get any better."<br /><br />Ms. Smith signed a consent form agreeing that Stonewall would be fed and given minimal "supportive care," but no antibiotics or surgery. Later, when she had questions about her baby's treatment, the doctor refused to make himself available to answer them. Ms. Smith also says that she did not know that she could have taken her son to another hospital, where he would have been treated at once.<br /><br />During the five years of the study, 69 babies with spina bifida were born in the Children's Hospital of Oklahoma (now known as Oklahoma Children's Hospital), a teaching hospital affiliated with the University of Oklahoma. Thirty-three babies were recommended for "supportive care" without treatment; eight of them were eventually treated anyway, either because their parents insisted or because their parents or guardians eventually obtained more accurate information. All of the 24 babies whose parents consented to the "supportive care" regimen died. ( a twenty-fifth baby in the "supportive care" regimen was moved out of state by his parents and lost to the study. Two of the eight babies that were eventually treated also died, possibly because the treatments came too late.) Most of the babies who were deprived of treatment were born to women in the welfare system, who were paying for their care with Medicaid benefits. None of the 36 babies that were given antibiotics and surgery died from the effects of spina bifida. (One died in an accident.)<br /><br />In addition to being poor, many of the families of the children that were chosen to die were poorly educated. Frieda Smith felt that she was manipulated by a doctor who took advantage of her medical ignorance. Her experiences, and the experiences of other mothers whose babies died, raised serious questions about whether they truly gave "informed consent" when they signed the forms agreeing to the "supportive care" regimen. Indeed, some parents came away from their meeting with the doctor under the false impression that the hospital was not required to treat babies who did not meet the "criteria for treatment" (i.e., the formula).<br /><br />Ms. Smith and her husband John, who are European-Americans, joined two other parents in a lawsuit against the hospital, the Oklahoma Department of Social Services, administrators in both institutions and the doctors and social workers who conducted the study. Cheparney Camp, a Native American, sued over the death of his daughter Melissa, and Sharon Jackson, who is African-American, sued on behalf of her son Carlton. Carlton, in the words of attorney Jane Brockman, "beat the odds." He survived for months in a children's center, where the nurses and attendants cared for him. Eventually, Ms. Johnson insisted that he be treated. However, the months-long delay caused him to develop more severe impairments than he would have sustained if he had been treated within 48 hours of his birth - which is standard procedure.<br /><br />Sadly, the lawsuit was unsuccessful. The National Legal Center for the Medically Dependent and Disabled, in conjunction with Oklahoma attorneys, represented the plaintiffs through nearly 10 years of hearings and appeals, before the Supreme Court decided, last January, not to hear the case. The plaintiffs began in the Federal Courts with an 11-count complaint, charging wrongful deaths, malpractice, violations of fundamental Constitutional rights, a failure to inform the families that they were participating in an experiment, discrimination under Section 504 of the Rehabilitation Act and other violations of Federal law. Between 1983 and 1990 the courts threw out all the counts. When the Supreme Court refused to reinstate the Section 504 complaint in January, they ended the long legal battle.<br /><br />"What the Supreme Court could have done by recognizing we had a viable complaint under Section 504 was to send a message to hospitals all across the country, and physicians across the country that you *will* have claims against you if you discriminate against the disabled child in a situation where the treatment is related to that disabling condition," says Jane Brockmann, one of the National Legal Center attorneys who handled the final stages of the case. "We could have scared physicians across the country away from what these physicians did."<br /><br />Readers of <span style="font-style: italic;">The Rag</span> will recall that the European Holocaust of World War II began with the government-ordered murder of persons with physical and mental disabilities, most of whom were killed by their own doctors. This program began two years before World War II and claimed the lives of over 100,000 Germans with disabilities. Ever since the full scope of the Nazi racial crimes was revealed, Americans have insisted to the world that the mass murder of "undesirables" under the authority of State and Science is a crime of which we are not capable.<br /><br />Indeed, if there is a difference that stands out between the attitudes of the German doctors who murdered their own patients and the "researchers" at the Oklahoma Children's Hospital, it is this: the German doctors acted in secret, knowing that their crimes must not be exposed. They hid their killings behind an elaborate arrangement of phony death certificates and other official paperwork. The Oklahoma doctors, on the other hand, proclaimed what they had done openly, in the most prestigious medical journal of their specialty. They understood the attitude of the American public towards persons with disabilities. Evidently, they understood it better than we disability rights activists do today! They knew that any furor over their crimes would dissipate without harming their careers, and they knew that in the end their colleagues would admire and emulate them.<br /><br />"We are beginning to see hospitals going to court, trying to establish `rights' for themselves," says Ms. Brockmann. "Hospitals are seeking the right not to treat some patients." Of course, these patients are persons with disabilities who require expensive, intricate and sometimes long-lasting treatment. In extreme cases, hospitals have sued to have a legally competent parent or spouse removed as the guardian of a person with a disability, so that a new guardian can be appointed to discontinue treatment. Ms. Brockman sees a trend in the courts: "It seems that when a patient with severe disabilities sues to request that treatment be withheld, the courts are inclined to grant that request; but when someone sues on behalf of such a patient in order to continue treatment, they will have an uphill battle. Treatment should be the default decision in ambiguous cases. The Constitution expressly protects the right to live. As Congress begins to debate the role of rationing in health care reform, the court will no doubt rule on more "right-not-to-treat" cases.<br /><br />Today Carlton Johnson, the boy who "beat the odds," is 10. He attends a segregated educational program for children with disabilities, where he is making progress. He does not communicate by speaking, but he is an alert, active and competent child who wheels himself about and plays for hours on an electric organ his family gave him. He recognizes friends and loved ones. He has the capacity for enjoyment and happiness. His life may not be "useful" according to the pseudo-mathematical standards of the of the doctors who once condemned him to death, but he has one great advantage over the men and women who once plotted to deprive him of his life. He will never, ever commit an act of injustice towards another human being as great as the crime they committed against him.<br /><br /><span style="font-weight: bold;">Further reading</span>: "The Civil Rights of Handicapped Infants," by M.H. Gerry, in <span style="font-style: italic;">Issues in Law and Medicine</span>, a 1985 publication of the National Legal Center for the Medically Dependent and Disabled. The article reporting the results of the "study" is "Early Management and Decision Making for the Treatment of Myelomeningocele," by R.H. Gross et al, in <span style="font-style: italic;">Pediatrics</span>, Vol. 72, 1983.</blockquote>Stephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com6tag:blogger.com,1999:blog-4278015561752016263.post-48458764580035154572010-02-09T14:37:00.003-05:002010-02-09T15:03:45.329-05:00Update: Hartford Courant Columnist Says it's Time Richard LaPointe Gets a New TrialReaders of this blog might recall <a href="http://hydrocephalusandme.blogspot.com/2009/03/after-17-years-richard-lapointe-has-win.html">an earlier post about Richard LaPointe</a>, a man with hydrocephalus and associated neurological issues, who is currently in prison after being convicted in the murder and rape of his wife's grandmother. There are lots of serious doubts about the case - including the "confession" that LaPointe gave (his third after two attempts to get the details in that the police wanted).<br /><br />I received an update today from <a href="http://www.robertperske.com/">Bob Perske</a>, who has been fighting along with others to get Richard LaPointe a new day in court. You can read more about Bob Perske in the link above - his advocacy for Richard LaPointe is just one chapter of a long career of dedicated advocacy for the rights of people with developmental disabilities.<br /><br />The news from Bob is that Richard has a new hearing in May. <a href="http://www.courant.com/news/opinion/courant-columnists/hc-green,0,3979875.columnist">Rick Green</a>, a columnist at the <a href="http://www.courant.com/"><span style="font-style: italic;">Hartford Courant</span></a>, writes that maybe - just maybe - this hearing will result in what LaPointe deserves: <a href="http://www.courant.com/news/opinion/courant-columnists/hc-green_lapointe_0209.artfeb09,0,607146.column">A new trial</a>:<br /><em style=""></em><em style=""></em><blockquote><em style="">O</em>ne of the nation's most notorious examples of alleged wrongful conviction will soon return to center stage, perhaps finally providing an answer to a disturbing question.<br /><br />Could convicted killer Richard LaPointe really have raped and murdered Bernice Martin?<br /><br />Perhaps LaPointe's last shot at freedom will come in a <a class="taxInlineTagLink" href="http://www.courant.com/topic/us/pennsylvania/northampton-county-%28pennsylvania%29/bethlehem-%28northampton-pennsylvania%29/rockville-%28bethlehem-pennsylvania%29-PLGEO100101022013100.topic" title="Rockville (Bethlehem, Pennsylvania)" id="PLGEO100101022013100">Rockville</a> courtroom this May, when a judge will consider evidence that his supporters say proves he deserves a new trial.<br /><br />The May hearing could lead to freedom for the mentally disabled man who was found guilty in 1992 of the rape and murder in Manchester of Martin, his wife's 88-year-old grandmother.<br /><br />The result will say plenty about justice in Connecticut. There has been no willingness by authorities to re-examine the questionable circumstances surrounding LaPointe's conviction.<br /><br />The questions begin with the blind acceptance of a confession from a man with an I.Q. of 80 and extend to the exclusion of critical evidence and the incompetence of LaPointe's previous lawyers.<br /><br />The evidence against LaPointe, now 64, in the 1987 crime is impressive — three confessions and a failure by his supporters to prove, despite repeated attempts, LaPointe's innocence.<br /><br />But now, because of a state Appellate Court ruling last year, which overturned a lower court's ruling dismissing LaPointe's bid for a new trial, a Superior Court judge will review whether critical exculpatory evidence — an expert's analysis of the "burn time" of the fire that was set by the killer to cover up the murder — was not disclosed by the state.<br /><br />"The state suppressed evidence. [LaPointe's] lawyers were ineffective. They didn't make use of the evidence that shows he didn't commit the crime," said Paul Casteliero, a lawyer for LaPointe. "The jury should have been aware of that."<br /><br />"It is mind-boggling to me. The state never fixes a time when this whole thing happened."<br /><br />Casteliero says that the evidence, in the form of notes from an arson investigator, doesn't fit the state's scenario for the murder on the evening of March 7, 1987. He said the notes suggest that the fire that Martin's killer set after the murder had burned too long for LaPointe to have quickly assaulted and murdered Martin and then calmly returned to his nearby home for an evening of television watching.<br /><br />Chief State's Attorney Kevin Kane declined to comment about the case because it is a pending matter.<br /><br />The state Appellate Court, in a ruling last year that represents the first victory for LaPointe in the decades-old case, noted that if the fire had been burning for 30 to 40 minutes — instead of a much shorter period — then a potential, if thin, alibi emerges:<br /><br />"There was sufficient evidence presented ... to establish the potential exculpatory nature of a burn time estimation because evidence was submitted that, if credited, tenuously would have established an alibi for the window of time created by this burn time estimation."<br /><br />The state's unwillingness to reconsider is no surprise, said Kate Germond, an investigator and associate director of Centurion Ministries, which works to reverse wrongful convictions.<br /><br />"They hang on pretty tenaciously to these cases. I think they are used to having their own way. Their impulse is to circle the wagons."<br /><br />"This case in particular really gnaws at us," said Germond, whose group is actively involved in about 20 cases throughout the country. "Richard is getting older. His life expectancy isn't as long as you and I might enjoy."<br /><br />A new trial for LaPointe is long overdue.<br /><br />Because if LaPointe didn't do it, this is more than a case of the system taking advantage of a hapless disabled man.<br /><br />The real killer may have gotten away with murder.<br /></blockquote>That last sentence is the part that people seem to miss when they get angry over wrongful conviction cases. Two miscarriages of justice - the innocent is jailed and the guilty stays free.Stephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com0tag:blogger.com,1999:blog-4278015561752016263.post-82869037151436111302010-02-03T15:00:00.002-05:002010-02-03T15:22:48.725-05:00"Writer's Logjam" - Worse than a "block" in many waysI have a case of "Writer's logjam." At first, I thought I was lucky and clever enough to coin the term on my own, but I guess it's no surprise that at least one person has used the term and <a href="http://silviahartmann.com/writers-block-help.php#writers-block-logjam">gives a pretty good description of what I'm dealing with at the moment</a>:<br /><p align="left"></p><blockquote><p align="left">This is really interesting because here, a person doesn't have enough ideas, they have way too many.</p> <p align="left">They start on one, go to another, and another, nothing gets ever finished and all those unfinished projects pile up and cause a logjam - and nothing moves at all any longer.</p> <p align="left">Not knowing that this is so, writers will DESPERATELY try to get MORE AND MORE ideas, thinking they've run out, and that makes the logjam ever worse until not a trickle gets through the dam any longer and we really have now absolute writer's block.</p> <p align="left">The solution for this is to take any one of THE OLD PROJECTS at the base of the logjam and to FINISH IT.</p></blockquote><p align="left"></p><p align="left">Obviously, I'm writing <span style="font-style: italic;">here</span>, so you might be thinking "what's the big deal?"</p><p align="left">The big deal is that I <span style="font-style: italic;">should</span> be writing something on the<a href="http://notdeadyetnewscommentary.blogspot.com/"> other blog</a> - the one I do as part of my job.</p><p align="left">But I have a problem. Last week included disrupted sleep patterns and time off so I could catch up with housework left undone while returning from the trip to Connecticut. Monday involved more disrupted sleep and then a sick day yesterday. <br /></p><p align="left">In the course of a week, at least four big things have come up related to my NDY work. I am full of ideas about how to write about each and every one of them. They are all important. And they are all currently tangled up in my head as I try to sort them out and figure out where to even <span style="font-style: italic;">start</span>. And, of course, if I don't write anything<span style="font-style: italic;"> today</span>, my dilemma will be even worse <span style="font-style: italic;">tomorrow</span>.<br /></p><p align="left">It suddenly occurred to me that one way to get something accomplished was to write about the current struggle here on this blog. That way, at least I'm writing again and not just obsessing about what I'm <span style="font-style: italic;">not</span> writing.</p><p align="left">The best case scenario is that this will somehow unstick my mental gears (alert: switching metaphors here) and I can get started on my other tasks.</p><p align="left">The worst case scenario is that whatever I write here will be all I write today. But at least that will be better than the alternative.</p><p align="left">This is far from the first time I've been in this situation. I know it won't be the last.</p><p align="left">If anyone has any ideas for getting through these logjams (alert: back to original metaphor), I'd be open to hearing them.</p><p align="left">I still have an hour or two left in the day. Maybe I can do better than just stare at the screen - I know that would make tomorrow easier. --Stephen<br /></p>Stephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com3tag:blogger.com,1999:blog-4278015561752016263.post-6607811269918709102010-01-25T14:52:00.004-05:002010-01-25T15:21:27.700-05:00Back from the road and glad to be homeThe trip to Connecticut went well, but the driving was a major challenge.<br /><br />OK, back up a minute. I don't want to overstate the case. I can still drive safely and well on a highway in the daylight. I have the necessary concentration, reflexes and attention-shifting to drive (and all the associated motor tasks in operating a vehicle), but I don't seem to have a lot left over. Once in awhile, I'll sneak a sip of iced tea from the travel cup in the holder - it has the top kept open - but that's about all I'll dare in terms of extraneous activity.<br /><br />Still, it didn't seem that hard while I was doing it. <br /><br />At night, my body told me a different story.<br /><br />Most of the time when I am in a hotel or motel, I am restless and don't sleep all that well, especially if I am keyed up about speaking.<br /><br />This time was different. After 7 hours on the road getting to our destination, I pretty much fell asleep very soon after my head hit the pillow. I struggled to get up after a full seven hours of sleep.<br /><br />We drove part way home on Friday. I spent about four hours on the road (total times always include breaks). Pulled off the road around 5 pm at the <a href="http://www.herkimermotel.com/">Herkimer Motel & Suites</a> in Herkimer, NY. I am naming the motel and providing a links because I recommend it highly. It's well-kept up, has helpful staff and has one of the best wheelchair-accessible rooms we've stayed in. If the opportunity arises, I'd gladly stay there again.<br /><br />We went to bed early that night. I got a wake-up call and went to turn the heat up. I figured I would wake up again in about 20-30 minutes when it got too warm.<br /><br />I slept for an additional 90 minutes. That means I slept between 8.5 and 9 hours. That is very very unusual for me. My body is usually satisfied with seven hours and maybe a few minutes more.<br /><br />The only explanation I have for this is that the driving really really exhausted me. Strange, though, because I didn't really feel that exhausted. But my sleep pattern tells a different story. <br /><br />It's just one more thing to factor in from now on. Looks like if I have to drive for a long distance, I better build in some extra sleep time.<br /><br />OTOH, as you might gather from this blog post, the trip didn't throw me too far off my work rhythm. <br /><br />This is a good thing. I have lots on my plate these days and really don't need to be falling behind more. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com2tag:blogger.com,1999:blog-4278015561752016263.post-12817813032514579092010-01-20T14:57:00.004-05:002010-01-20T15:09:54.057-05:00On the road again...*Sigh* Time for another road trip. <br /><br />Diane and I are giving a presentation in Connecticut on Friday. Theoretically, it's a five-and-a-half hour drive or so.<br /><br />I'm guessing it will be closer to seven hours. I need to take breaks when I drive. <br /><br />Also, even though we're finishing up around 1 pm on Friday, we won't get home until Saturday.<br /><br />I'm not sure if I've mentioned it here, but I've ceased highway driving in the dark (except for short trips close to home when necessary). It just takes too much effort.<br /><br />So hopefully I'll get us to Albany by dark on Friday and we can get home around noon on Saturday.<br /><br />Just so no one misunderstands me - I am looking forward to meeting with some of the people that will be attending and the opportunity to do some organizing work.<br /><br />OTOH - I really loathe long-distance driving. I don't like having the rhythm of my life get disrupted - it can take too long to get it back.<br /><br />I can't complain really. This means that there are people who feel that I have information and insights on disability policy issues worth hearing firsthand. And NDY needs more people in the disability community more attuned to the intricacies of the assisted suicide/euthanasia debates.<br /><br />In a perfect world, I'd be able to do advocacy without ever leaving my home or office. <br /><br />I don't live in <span style="font-style: italic;">that</span> world, however. So I'm going to Connecticut. :-) --Stephen DrakeStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com0tag:blogger.com,1999:blog-4278015561752016263.post-28595115326652002782009-12-29T15:49:00.002-05:002009-12-29T16:14:58.713-05:00I'm getting too old for thisIf I haven't spelled this out before, I have to pay a lot more attention to what my body is doing than most people do. That includes major things like driving, minor things like scooping coffee into the filter in the coffee maker, and potentially disastrous things like walking down the stairs.<br /><br />When it comes to our basement stairs, I have rules. I go slow. I watch my feet. I have at least one hand free to hold the railing. I pay attention to the act of going walking up or down the stairs and try not to get distracted.<br /><br />Sunday night, I broke all the rules. We had a minor plumbing disaster - turns out the garbage disposal was loose, which vibrated the heck out of the PVC sink pipes. The sink pipes came apart in two places. Water everywhere.<br /><br />First, I cleaned up that water on the kitchen floor. Then I called our plumber friend who said he could come out the next day. After that, I went to clear out the cupboard under the sink.<br /><br />I had the bright idea to put some of the stuff from under the sink on the wall shelf on the cellar stairs. I gathered up a bunch of stuff in both hands and started down the stairs. I made it about four steps down when my feet went out from under me and I slid down - hard - for a few steps. My sneakers were wet and the steps are bare wood - bad combination.<br /><br />Oddly enough I didn't drop anything. I did bang my left ankle and skinned both my elbows. After setting things on the shelf, I went back up and washed my elbows. They were sore.<br /><br />I was a little leery of the stairs after that, so I found a box and filled it with the rest of the stuff in the cupboard and stuck it in the back bedroom.<br /><br />As the evening progressed, I became aware of more aches and pains - took some aspirin and a muscle relaxant and went to bed.<br /><br />The next morning, my left elbow was causing me lots of trouble. As long as my arm was extended, it wasn't too much of a problem. But the more my arm flexed, the greater the pain - to the point where blowing my nose with two hands was almost impossible. After a great deal of research during the day, I decided the likeliest thing was that the injury had resulted in <a href="http://orthoinfo.aaos.org/topic.cfm?topic=A00028">olecranon bursitis</a>. <br /><br />You can read the description if you're interested, but it explained the pain and swelling. And I changed the treatment from aspirin to alleve. The elbow started to improve and I can blow my nose again. :-)<br /><br />So - within the next week or two, I'll be getting some kind of non-slip material for the cellar stairs. And I'll probably be better at following my rules.<br /><br />The thing is, no is perfect in adhering to a routine or set of rules - me included. Stuff like this happened to me when I was in my twenties and thirties, but I was a lot more flexible then.<br /><br />It hurts a lot more now. Gotta start getting serious about "Stephen-proofing" the house. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com3tag:blogger.com,1999:blog-4278015561752016263.post-31612113034935730292009-12-17T15:25:00.004-05:002009-12-17T15:57:40.051-05:00Unexpectedly Long Hiatus - Expansions and Contractions of LifeI am mortified that I neglected this blog for so long. My apologies to anyone who had developed an interest in it.<br /><br />I wish I could promise it won't happen again, but it might, because this blog is one of those "add-ons" in my life - meaning I do it when I have the time, energy, and concentration to write on it after having met the core obligations of my life - family and job, mostly.<br /><br />The trouble is, I get into really (and uncharacteristically) highly productive periods. I take new things into an already crowded life and manage it all joyfully for awhile - sometimes a long while. Then something gives and I have to retreat to managing my core obligations until I am ready to start expanding my workload again.<br /><br />It's no easy feat. For one thing, there's the "executive dysfunction" to deal with. Many of us who fall outside of the neurotypical range have trouble managing the minutiae of everyday tasks and obligations - I'm no exception. Rather than going into a long treatise on what that means, I'll share the following song that I originally discovered when my friends at the <a href="http://turnerandkowalski.wordpress.com/">Turner & Kowalski blog</a> posted it:<br /><br /><span style="text-align: center; display: block;"><embed src="http://www.youtube.com/v/lAG-XwriZS4&rel=1&fs=1&showsearch=0&hd=0" type="application/x-shockwave-flash" allowfullscreen="true" wmode="transparent" width="425" height="350"></embed></span><br /><br />So does every line of this song apply to me? No, but it's definitely familiar territory. Periodically, the juggling of the absolute essentials can pretty much occupy all my time and energy.<br /><br />In the months since I last wrote, we took a nice vacation at home with Diane's (my partner) sister and niece. I've only had to travel out of town once - for which I am very grateful. We've had to deal with Diane coming down with the Swine Flu and get sicker than she's been in maybe 20 years - but we got through that.<br /><br />We also have a new member of the household. He's a three-legged 11-year-old cat named "Oliver." Long story. If you're on Facebook, <a href="http://www.facebook.com/pages/Oliver-the-Cool-CripCat/191753389860?ref=ts">you can join his fan page here</a>.<br /><br />That's all for now. At the very least, I'll try to post some links to some good stuff I've come across over the past few months that are relevant to the topics this blog is supposed to cover. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com2tag:blogger.com,1999:blog-4278015561752016263.post-15361549827583667842009-06-15T18:28:00.003-04:002009-06-15T18:47:33.852-04:00Autube: A conversation with Stephen DrakeWell, if anyone is curious as to what the voice behind the typing sounds like, I am up live on a podcast on <a href="http://www.autube.tv/">Autube</a>.<br /><br />Autube, funded by the <a href="http://www.danmarinofoundation.org/">Dan Marino Foundation</a>, is "an issues-driven web channel enabling exchange of ideas for people with autism." The site is designed and operated by <a href="http://www.kentcreative.com/index_2.html#">Kent Creative</a>. The podcast is an edited version of an interview of me that was conducted by <a href="http://www.kentcreative.com/jonkentbio.html">Jon Kent</a>, president of <a href="http://www.kentcreative.com/index_2.html#">Kent Creative</a>.<br /><br />A few words about the interview:<br /><ul><li>My intonation is uneven and my speech hesitations worse than usual - a result of doing the interview while imitrex and a migraine battling it out in my skull.</li><li>There are a couple of places where I laugh (kind of) and it might seem weird. In at least one of those places - talking about "aversives" - it was more of a nervous "tic" talking about something I hate looking back at, but feel I have a duty to do just that.</li><li>A lot of specific information about media coverage and advocacy groups was edited out of the interview. This is understandable but regrettable. Hence, the quote from a leader of a Canadian "right to die" group equating the length of a girl with cerebral palsy's life with a prison sentence is mentioned. Also missing is a lengthy discussion of the coverage of Katie McCarron's murder - and the role that specific advocacy groups played in promoting a "blame the victim" theme in coverage of her death.</li><li>Finally, this is in audio only. The site is a new one and they are working at providing print transcripts of podcasts.</li></ul>So, for anyone who is interested, here is a discussion of some of my journey through life and the advocacy work I do now:<br /><br /><a href="http://www.autube.tv/sites/default/files/Stephen_Drake_conv_1_24K.mp3">A conversation with Stephen Drake</a> (mp3 format)<br /><br />That's all for now. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com1tag:blogger.com,1999:blog-4278015561752016263.post-38826780066967725252009-06-03T10:14:00.004-04:002009-06-03T10:45:45.111-04:00Minefields, stumbling and explosionsWell, I made it through the conference. But, as the title suggests, I didn't do it without managing to set off a few "mines" of the social variety.<br /><br />Some of it was unintentional. At a preconference meeting, I have it on good authority that at least one of my contributions came off as interrupting, slightly off-topic and maybe rude. That's me when I'm <span style="font-style: italic;">trying</span> to <span style="font-style: italic;">behave</span>.<br /><br />I've written a long account of the major events that sparked some explosions <a href="http://notdeadyetnewscommentary.blogspot.com/2009/06/is-coalition-possible-jury-is-still-out.html">in the NDY blog</a>. Here's an excerpt describing a key event I want to discuss here:<br /><blockquote>For me, things came to a head on the first day when a representative of the LaRouchePAC stepped up to the audience question-and-answer microphone. He read a piece of crap he called “research” that labeled Obama’s health care plan (what we know so far) as a “Nazi plan.” To my disgust and horror, over half the audience broke out into applause over that.<br /><br /><span style="font-style: italic;">(Note: Below, "Alex" refers to Alex Schadenberg, who is the E.D. of the Canadian-based Euthanasia Prevention Coalition, which organized the conference.)</span><br />I took Alex aside and told him that he had no idea what just happened and how bad it was. The LaRouchePAC is one of several entities attached to Lyndon LaRouche, conspiracy enthusiast. Pretty much no one of any political stripe who wants to be taken seriously becomes associated with the man or his group. (BTW, the guy from the PAC got in for free with a “media pass” – probably from his home printer, and then did the un-journalistic move of leaving promotional materials. He also didn’t ask any questions. Maybe this gives you an idea of the ethics – or lack thereof – in how they operate.)<br /><br />Alex let me take the podium in response. I can’t remember everything I said, or the argument I had with the guy from the PAC. But I knew it wouldn’t be enough, especially with repeated exposure to material that had nothing to do with euthanasia and assisted suicide.<br /></blockquote>There are a few things I should share here about what went on within my brain and body during this short span.<br /><br />I don't get panic attacks, but my body can do a good imitation of one in high-stress situations. When I know I am heading into a high-stress situation, I take a beta blocker in advance. That medication dampens the bodies response to stress hormones and adrenalin.<br /><br />Stupidly, I had not taken one that day.<br /><br />So, when I went up to Alex, I did so knowing I was risking a full-scale physiological rebellion. In fact, when talking to him and when I went up to the podium, my legs were shaking badly and I was having trouble controlling my breath. Fortunately, it didn't escalate into facial contortions and even worse problems with breathing. I may have looked enraged rather than alarmed and pissed, but I looked in control.<br /><br />And it was necessary - letting it go would have signalled acceptance or approval, making the work ahead much more difficult. That includes damage control.<br /><br />As you can read on the NDY blog, I followed up with more of the same the next day, this time with a body becalmed with a beta blocker.<br /><br />As you might imagine, some in my audience - justifiably - heard what I had to say as a criticism or even attack on them. This is seldom done in the context of a "coalition."<br /><br />Thing is, I am more likely to go there than most. I understand the power that group dynamics play in the lives of people. I understand a lot of it intellectually. But I don't feel the pull - emotionally - to maintain the appearance of unity, cohesion and solidarity at any cost. <br /><br />On the one hand, it leaves me freer to see when it's appropriate to break from the group. OTOH, it means I am vulnerable to underestimating the cost of breaking those norms.<br /><br />Fortunately, I have someone who "gets" those dynamics in a more conventional way. When I lay my case out and Diane says she agrees, then it's always been a good move - or - to be honest - the least bad one. <br /><br />S'all for now. Gotta go on another longer drive tomorrow. Be back Sunday night and hopefully posting again next week. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com2tag:blogger.com,1999:blog-4278015561752016263.post-67906198421376932142009-05-26T13:53:00.002-04:002009-05-26T14:10:57.203-04:00Gone til next week...I will be almost totally offline between tomorrow morning and Sunday evening. What email access (if any) will be limited.<br /><br />I have to go to a conference - one of my least favorite parts of my job. To make it worse, the day before the conference involves a strategy meeting. <br /><br />Great. Sitting at a table of people with smooth social skills trying to get a word in edgewise.<br /><br />It's not that I can't do it. I can. And I'll probably come across as rude when I interact in a group situation (I usually do). But fortunately, I'm an invited speaker and I'm entitled to speak up - I just can't seem to do it as smoothly and ingratiatingly as the NTs dominating the group.<br /><br />It used to be worse. When I was a grad student, I was attended regular department meetings. I seldom said a word. After the meetings, I'd usually reflect on some issues that were discussed and finally was asked by someone why I didn't bring those reflections into the meetings themselves - while the meeting was still going on.<br /><br />What I told the colleague was that I was totally clueless as to the signals others were following to know how and when to break smoothly into a free flowing, unstructured meeting. The few times I'd tried it, it was obvious that my own attempts to break in came across as rude somehow.<br /><br />To my great surprise, I was accommodated without asking. Meetings were then conducted through turn-taking, with people signalling they wanted to speak. It made life much easier as far as the meetings.<br /><br />In a gathering like this, it's easier. Fellow participants allegedly want my input - so I'm expected to speak and they have to act like they want me to. (wink)<br /><br />And I don't worry about being being perceived as rude, as long as I don't set out to be that way. As an activist, it's not that bad if people are a little concerned about how badly you'll depart from an atmosphere of civility, solidarity and cohesion.<br /><br />It will be exhausting, but necessary work. I just wish it didn't feel like the social equivalent of trying to tiptoe my way through a minefield. (to understand that metaphor fully, you should know that my balance is bad enough that I would flunk the standard field sobriety test. Tiptoeing through a minefield is a very very troubling metaphor to me) --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com2tag:blogger.com,1999:blog-4278015561752016263.post-62801925328636423432009-05-18T16:12:00.004-04:002009-05-18T16:37:03.087-04:00A Crash Course in NeurodiversityI've been kind of taking it for granted that most people who seek out this blog know what the heck "neurodiversity" is. Lately, I've been thinking that is a faulty assumption on my part. Luckily, there are two very recent items I can point people two that can give folks a basic grasp of the concept of neurodiversity.<br /><br />First, I want to point you to this week's edition of <span style="font-style: italic;">Newsweek</span>, featuring my friend and colleague, Ari Ne'eman. Ari is a founder and president of the <a href="http://www.autisticadvocacy.org/">Autistic Self Advocacy Network (ASAN)</a>. Here is an excerpt from the article <a href="http://www.newsweek.com/id/197813"><span style="font-style: italic;">Erasing Autism</span></a> by Claudia Kalb:<br /><blockquote>Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.<br /></blockquote><a href="http://www.newsweek.com/id/197813">Read the rest of the article</a>. It's worth your time and effort.<br /><br />Meanwhile, on another continent, my friend Kev Leitch has written a <a href="http://leftbrainrightbrain.co.uk/?p=2351">FAQ on Neurodiversity</a>. Kev is a parent of a child with autism. Like many of my contacts in the autism community, we met through <a href="http://www.notdeadyet.org/docs/mccarron/mccarronphotos.html">the shared experience of tragedy and outrage over the death of Katie McCarron</a>. As Kev's disclaimer clearly states, there are other descriptions of neurodiversity and he doesn't mean this to be the last word. But it's a good place for beginners (and a good read for the rest of us, too).<br /><br />Excerpt:<br /><p></p><blockquote><p>Proviso: I am not a spokesperson for any other person and/or group. The term ‘neurodiversity’ did not originate with me. What follows is my personal opinion and what I believe the concept of neurodiversity represents. I believe I voice opinions common to many in the neurodiversity group but I may well be wrong. Sometimes I refer to ‘we’ and sometimes ‘I’. When I refer to ‘we’ I think I am repeating the consensus of neurodiversitiy opinion but bear in mind I could well be wrong.</p> <p><strong>1) Neurodiversity proponents are anti-parent.</strong></p> <p>False. I’m a parent. I’m parent to 3 kids of whom two are NT and one is autistic. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen Seidel is a parent. Camille Clark is a parent. Anne Bevington is a parent.<br /></p></blockquote><p></p><div id="TixyyLink" style="border: medium none ; overflow: hidden; color: rgb(0, 0, 0); background-color: transparent; text-align: left; text-decoration: none;">Read more: "<a href="http://leftbrainrightbrain.co.uk/?p=2351">Autism Blog - A Neurodiversity FAQ « Left Brain/Right Brain</a>"<br /><br />That's all for today. --Stephen<br /></div>Stephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com2tag:blogger.com,1999:blog-4278015561752016263.post-32553126253022213642009-05-11T10:08:00.006-04:002009-05-12T11:21:40.243-04:00My take on the "cure" debate<span style="font-size:100%;"><span style="font-family:arial;">I figure that most people who check out this blog are familiar with the conflict between the neurodiversity community (I count myself as a member) and the "cure" crowd.</span><br /><br /><span style="font-family:arial;">"Curebies," as they are sometimes referred tend to see "autism" as something that "stole their kid from them," had a single identifiable cause, and (if we only work, spend and wish hard enough) can be "cured" - leaving a "normal" kid in place of the kid with autism. Jenny McCarthy, who was hard to avoid on the talk show network last month, is a prime example of a "curebie."</span><br /><br /><span style="font-family:arial;">What do neurodiversity advocates want? Well, here's a brief description from the </span><a style="font-family: arial;" href="http://www.autisticadvocacy.org/">Autistic Self Advocacy Network (ASAN)</a><span style="font-family:arial;">:</span><br /></span><blockquote style="font-family:arial;"><span style="font-size:100%;">ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. Our activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of autistic cultural activities and other opportunities for autistic people to engage with others on the spectrum.<br /><br />ASAN initiatives include the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), an active Speaker's Bureau and advocacy in support of autism and disability-related issues such as de-institutionalization and community living supports, educational opportunity and inclusion, employment supports and other initiatives at both state and federal levels.<br /></span></blockquote><span style="font-size:100%;"><span style="font-family:arial;">Notice that there's nothing about "curing" autism in terms of their advocacy efforts.</span><br /><br /><span style="font-family:arial;">So what's my take on "cures?"</span><br /><br /><span style="font-family:arial;">I think that the pro-cure vs. anti-cure description promoted by cure enthusiasts invites all to ask the wrong questions.</span><br /><br /><span style="font-family:arial;">Stepping aside from autism for a bit, let's look at two other famous people pitching for "cures." </span><br /><br /><span style="font-family:arial;">Jerry Lewis has spent decades pitching for a "cure" for muscular dystrophy and related neuromuscular conditions (my partner has one of those other conditions). A moment of critical thinking on the part of the public is that any "cure" can only stop a progressive condition where it is - it can't replace lost muscle or effect a change that will help a 20-year-old with Duchenne muscular dystrophy walk. It can only prevent disability of any kind if the cure is administered soon after onset.</span><br /><br /><span style="font-family:arial;">Similarly, Christopher Reeve popularized spinal cord research with the promise that he would walk again. Spinal cord injury research is important and promising. It may someday restore some movement and sensation to people to people long affected by their disability. But the only people it will prevent disability in are the newly injured. The idea that any cure will counter the bone loss and muscle atrophy of a person who has spent years without use of their legs was - and still is - a fantasy.</span><br /><br /><span style="font-family:arial;">So how about autism and other neurological conditions?</span><br /><br /><span style="font-family:arial;">Interestingly, I have a neurological condition with an identifiable cause. </span><br /><br /></span><span style=";font-family:Arial,Verdana,Helvetica;font-size:100%;" > I developed hydrocephalus within my first few months as a result of birth-related injuries.<br /><br />Left untreated, hydrocephalus will result in progressive physical and cognitive disability - and probably an early death.<br /><br />So I have this tube in my head that was inserted through the right side of my brain and goes into the ventricles - it drains fluid from the brain down into a chamber in my heart.<br /><br />So - further disability was halted and I've gotten to live a pretty long and enjoyable life by the most important standards I know - my own.<br /><br />It doesn't mean that I don't have disabilities.</span><span style="font-size:100%;"><span style="font-family:arial;"> I am a veritable smorgasbord of neurological "soft signs."</span><br /><br /><span style="font-family:arial;">So how do I translate that when it comes to autism? Like this:</span><br /><br /></span><span style=";font-family:Arial,Verdana,Helvetica;font-size:100%;" >The brain is an incredibly complex and interconnected system. Whatever thing or things develop differently in the brain of autistic persons don't operate in isolation. There's evidence in both autism and in brain injured people that the brain will reorganize itself and work in radically different ways than originally designed in its efforts to make up for the injury and/or divergent development.<br /><br />What does this mean in terms of "cure"? To me, it means that if a single element or managable set of them can be isolated, a "cure" can only operate as such if it happens fairly early in the process.<br /><br />I don't see any way - given the plasticity and compensatory mechanisms that have probably developed in the brain - that you can "flick a switch" and have a suddenly "normal" adult/adolescent/older child with autism.</span><span style="font-size:100%;"><br /><br /><span style="font-family:arial;">So, for me, it's not a matter of being "anti-cure" as much as it is a matter of tilting against windmills. And I should explain that to me, there is nothing admirable about tilting against windmills. Don Quixote thought he was fighting giants, which would be admirable. There is no </span></span><span style="font-style: italic;font-family:arial;font-size:100%;" >point</span><span style="font-size:100%;"><span style="font-family:arial;"> in fighting windmills. Unlike many people, I see nothing romantic about the story - just a sad parable about wasting your energy on the wrong target.</span><br /><br /><span style="font-family:arial;">And even if you could alter the brain that radically, would the kid or adult after the "cure" be the same one as the one who previously inhabited the body?</span><br /><br /><span style="font-family:arial;">I don't have an answer for that last one. --Stephen Drake</span><br /><br /><span style="font-family:arial;">PS - If anyone is curious about what sparked this sudden venture into the world of neurodiversity and the issue of "cures," check out </span><a style="font-family: arial;" href="http://notdeadyetnewscommentary.blogspot.com/2009/05/president-of-asan-under-attack.html">today's entry on the NDY blog</a><span style="font-family:arial;">.</span></span>Stephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com15tag:blogger.com,1999:blog-4278015561752016263.post-34566430591269394532009-04-21T13:36:00.002-04:002009-04-21T14:01:16.692-04:00The happy misinterpretation of successful coping strategies - or "How I Met My Partner"The thing about developing useful coping strategies is not only can they get you through difficult situations, they can even - in some cases - be wildly successful.<br /><br />In fact, part of the reason I ended up with the woman I've spent my life with for about 12 years now is that she completely misinterpreted my motives for doing something when she first met me. That made a huge favorable first impression that I haven't managed to erode entirely - yet.<br /><br />I'll have to back up a bit. Back in 1996, I received an email alert about this new organization named Not Dead Yet, a disability rights group devoted to fighting legalization of assisted suicide and euthanasia. I won't bore anyone here with the story of my own growing fascination at the time with what I perceived as a "better dead than disabled" theme in pro-"right to die" rhetoric, but I was excited about this group since its reasons for opposing these policies were the same as mine - secular and based in a disability rights perspective.<br /><br />The group had planned its first protest action in Michigan. The "targets" were a bioethics conference and Jack Kevorkian's house. As a grad student, I didn't have much money, but I did have a friend in the area who found another friend who allowed me to stay at her apartment for the three days I would be there.<br /><br />Underneath my excitement was a fair amount of anxiety. I am a blob - a reclusive, unsuccessful schmoozer in a large group of strangers. The desire to make connections and the fear of having it all fall flat because I'm so bad at these situations always contend with each other.<br /><br />Fortunately, I've learned to look for opportunities that can structure my interactions in a group like that. Find a role or job that gives me something to do rather than stay in the corner or try to find something that resembles ice-breakers in the way of conversation.<br /><br />As someone who has trouble with keeping to a schedule, I compensated in the usual way and was the first person to arrive at the protest action on the first day. The person I later learned was Diane was the second person. <br /><br />I asked her if there was anything I could do. She asked if I would sell tshirts. I jumped at the opportunity and spent the morning meeting people, taking their money and picking out tshirts for them, with little bits of conversation flowing the whole time.<br /><br />I did a couple other things during the protest days that helped establish myself as someone who was generally bright and helpful.<br /><br />But I learned later, that as far as Diane was concerned, it was that first day with the tshirts that made such a great impression on her. (We did a delicate dance on the phone in the month following the protest - political turning to personal gradually)<br /><br />After we ended up together, she told me that the first thing that drew her attention was my <span style="font-style: italic;">generosity</span>. I helped with the tshirts. I laughed when she told me and explained the entirely self-serving nature of volunteering to do that. At the time, she wasn't sure what to make of that. <br /><br />Gradually, she's come to accept that really <span style="font-style: italic;">is</span> the truth. She's seen me kind of wander around aimlessly in enough social gatherings to see that I really appreciate some kind of facilitation.<br /><br />But it worked out well enough, as far as I'm concerned. And Diane says she's pretty OK with how it worked out as well. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com7tag:blogger.com,1999:blog-4278015561752016263.post-28537371044836368202009-04-09T13:47:00.003-04:002009-04-09T14:05:18.321-04:00My take on "Autism Awareness Month"I have a feeling that apologies for neglect may become a regular feature here. I won't bore folks with the details this time, but I've been buried when I haven't been sick (sick taking up a couple of my days).<br /><br />I do have something to share today. Nonverbal learning disabilities are widely regarded as falling somewhere in the general category of "autism spectrum disorder." (I prefer the terms "cousin" or "AC" myself and have a story about that I'll share in the future.)<br /><br />In deference to that relationship, and to a general concern about the general promotion of useful disability advocacy, I wrote my first blog post for the <a href="http://www.cdrnys.org/">Center for Disability Rights</a>, which is where Not Dead Yet (NDY) headquarters in now located. Below is the link and the intro paragraphs to my primer on "Autism Awareness Week."<br /><br /><a href="http://cdrnys.org/wordpress/?p=187">Autism Awareness Month</a><br /><blockquote>Most people in the disability community are aware that April 2nd is Autism Awareness Day. If you’ve noticed that there’s still a heavy amount of autism coverage in the media, it’s because April has now been delegated Autism Awareness Month. <p>Autism Awareness Month is a good opportunity to talk about some of the problems, particularly the problems that are actually promoted in the name of “autism awareness.” These problems make many people, including myself, dread the month more than I dread the <a title="Link to blog covering Jerry Lewis" href="http://cdrnys.org/wordpress/?p=140" target="_blank">Jerry Lewis/MDA Telethon</a>, which lasts a mere 24 hours. </p> The disability community has long criticized the Telethon for its emphasis on a “cure” as the most pressing need for people with disabilities. To promote that agenda, people with disabilities are portrayed as objects of pity. Those portrayals act as additional barriers to the respect, inclusion and accommodations for which people with disabilities advocate.<br /></blockquote>Please read the rest. I'll be back as soon as time, schedule and energy allow. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com0tag:blogger.com,1999:blog-4278015561752016263.post-27349899597903221022009-03-25T18:01:00.005-04:002009-03-25T18:49:55.989-04:00After 17 Years, Richard Lapointe Has a Win in Court<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3mRz0grHRBiMZ0rcOKXwk6r1FEgmc-oti8e3XFLdg4-7zfmJETH41n1rIAil781dlQ9rshDIsFWEvOOu82h0fBnqKnqiHdQ9_Jk_plOp2k7oYsWL1umG1kt2ahUToK1QWDDjmxB6lAMw/s1600-h/lapointe140.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 140px; height: 137px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3mRz0grHRBiMZ0rcOKXwk6r1FEgmc-oti8e3XFLdg4-7zfmJETH41n1rIAil781dlQ9rshDIsFWEvOOu82h0fBnqKnqiHdQ9_Jk_plOp2k7oYsWL1umG1kt2ahUToK1QWDDjmxB6lAMw/s320/lapointe140.jpg" alt="" id="BLOGGER_PHOTO_ID_5317255725613850498" border="0" /></a><br />I'm guessing that most people who read this blog aren't familiar with Richard Lapointe. It's not surprising, since he's been incarcerated for about 17 years, convicted of the rape and murder of his wife's grandmother.<br /><br />(the picture on the upper left hand side of this post is of Richard Lapointe on the left and Bob Perske on the right. Bob Perske was the first person I who told me about Richard Lapointe's legal battle, over thirteen years ago. Bob has been the most constant of the many people fighting for Lapointe.)<br /><br />Richard has Dandy-Walker syndrome and hydrocephalus. He's physically clumsy and socially awkward. He is also the person who called the police to ask them to check on the grandmother, who hadn't answered the door when he knocked.<br /><br />He was initially questioned and dismissed as a suspect. For two years, the police thought they had a good idea who did commit the crime - someone with a violent history consistent with the crime, but whose whereabouts was unknown. When that person did surface, it turned out his blood type didn't match the physical evidence at the scene.<br /><br />With the case now two years worth of "cold," the police refocused on Lapointe. They interrogated him for 9 1/2 hours, sending him home in the early morning hours - after he'd signed three confessions. Only after he returned from work the next day did they arrest him. He's been in some jail or other ever since.<br /><br />Throughout the years, various appeals have been put forth on his behalf. Two of the main arguments are that he had incompetent/inadequate legal representation. The other part of the appeal rests mainly on the - now upheld - claim that the prosecutors suppressed exculpatory evidence.<br /><br />Here is an excerpt from a news story <a href="http://www.courant.com/news/crime/hc-lapointe-murder-trial,0,138371.story">just out on the <span style="font-style: italic;">Hartford Courant</span></a>:<br /><blockquote>The state Appellate Court ruled today that a Superior Court judge was wrong to dismiss Richard Lapointe's 2007 petition for a retrial, a decision that could get Lapointe a new trial in the 22-year-old murder case.<br /><br />Lapointe was convicted in 1992 for the rape, stabbing and murder of his then-wife's grandmother, Bernice Martin, 88, of Manchester. He is serving a life term without the possibility of parole.<br /><br />For years, many have questioned whether police fingered the right suspect, arguing that Lapointe, who has diminished mental capacity, was physically and mentally unable to commit the crime.<br /><br />Lapointe's supporters and a lawyer from a national group that represents those it believes are wrongfully convicted, have pushed for a new trial for Lapointe, who has spent the past 17 years at MacDougall -- Walker Correctional Institution in Suffield.<br /><br />The lawyer, Paul Casteleiro of New Jersey, represented Lapointe in a hearing for a new trial in July 2007. During the hearing, Casteleiro argued that his client, now 63, deserved a new trial on the grounds that his public defenders in 1989 did not provide him with adequate representation and that his lawyer, in a bid for a new trial in 2000, was ineffective.<br /></blockquote>For more information on the long history of the legal battles waged on behalf of Richard Lapointe, please check out the <a href="http://www.friendsofrichardlapointe.com/">Friends of Richard Lapointe</a> website.<br /><br />More information as I get it. And I will try not to let so much time go between posts this time. Work and life have a way of eating up all of my time and energy. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com0tag:blogger.com,1999:blog-4278015561752016263.post-18134431948782502732009-03-12T16:20:00.003-04:002009-03-12T16:39:35.322-04:00A little catch-up - and a little about the writing processFor anyone who's interested, I was quoted in a story in yesterday's edition of the NY Times. It's about the "story of the week" (at least in the NDY arena) - the arrests/investigations of the Final Exit Network members.<br /><br /><a href="http://www.nytimes.com/2009/03/11/us/11suicide.html?hp">Link to story</a>. My quote is on the second page about halfway down.<br /><br />I'm hoping to have a video of a recent appearance on Fox News up soon. It will be useful in talking about just what it takes for me to prepare for those things.<br /><br />I find that two things have really enhanced my ability to write.<br /><br />1. The format and context of the blog as a medium;<br />2. The extensive material available to my searches on google.<br /><br />See, I mostly don't have a problem trying to think of something I want to write about. I don't lack for things I wish to include in commentary or a critique.<br /><br />My problem - usually - is seeing way too many valid angles to attack an issue from and too many important points to make. Plus, some of those angles and points might not be readily apparent to readers without a lot of explaining.<br /><br />My mental processes are wildly associative. While in grad school, I was brainstorming with a classmate for an upcoming presentation on augmentative and alternative communication. I got on a roll and probably started talking for about ten minutes until I finally ended up talking about neanderthals and theories that they used sign language instead of speech.<br /><br />At that point, my friend reeled me in, pointing out that this was a 30 minute presentation and there weren't going to be too many people in the audience dealing with neanderthals.<br /><br />Point taken.<br /><br />So, I have learned - mostly successfully - to narrow my points and approaches when writing. That means an enormous amount of time gets spent deciding which of my fabulous insights get jettisoned, changing my mind a few times and then gritting my teeth and writing the damn thing. <br /><br />Yesterday's NDY post was pretty succesful in that way, I think. I stuck to one offhand reference to American humorist Will Rogers and focused on Irving Janis's theory of "groupthink."<br /><br />Today, I had the pleasure of digging out some old "dirt" on some of the current (and unarrested) spokespersons for the Final Exit Network. They both have a nasty history with defending the killing of children with disabilities.<br /><br />This is why I'm grateful to google. In the past, I'd have gone nuts trying to figure out where I'd read the things I'd remembered. Even if I saved hard copies of the material I thought of, they would undoubtedly be lost if they're more than a year old.<br /><br />Google is wonderful. Ten minutes and all the old archived material was there for me to use, link and quote.<br /><br />I'm not sure what I would have done in a world without computers and the internet. <br /><br />S'all for now. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com1tag:blogger.com,1999:blog-4278015561752016263.post-61163908367498688862009-03-09T15:07:00.002-04:002009-03-09T15:57:14.425-04:00Speed Bump of the Day - Chaos in the WorkplaceIt looks like today is a wash-out, except for today's blog here. The organization that donates office space to NDY is a growing one - and today they initiated a massive office reorganization.<br /><br />In reality, that meant that I spent the morning not sure of when I'd have to shut my computer down so it could be moved to my new space along with my phone. People were putting office furniture together behind me. A new person came in, anxious to take up her place at my desk.<br /><br />Things finally got moved around 2:00 pm. Other distractions started then, such as the IT people coming and a trying to problem-solve a way to wire new ethernet connections into the office next to the one I now occupy.<br /><br />I know this wasn't an easy kind of environment for anyone to work in, but it's pretty near impossible for me. When I do my posts on the other blog, I usually have to sort through at least a dozen approaches to whatever I'm commenting on in order to put together something that is meaningful, readable and coherent. I'm successful at this most of the time and I do it almost every day. Today was not that day.<br /><br />At one point, I thought about yelling and running wildly from the building, but thought that probably isn't the type of inservice I'd like to do on neurodiversity. (smile)<br /><br />It's all over now, but I don't have nearly enough time to organize my thoughts and get them put down in a way that's acceptable to me.<br /><br />That doesn't mean I'll just sit here and stare out the window, although that holds a certain appeal. I have a few email messages that need answering -- less planning and organizing involved, and I can still have managed to have responded in a timely manner.<br /><br />I might write about my experiences with writing in the future. Some of it's relevant to part of what Terri wrote in her own blog entry that I linked to the other day.<br /><br />Until the next time... --Stephen DrakeStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com2tag:blogger.com,1999:blog-4278015561752016263.post-66746401341075741102009-03-06T12:01:00.002-05:002009-03-06T12:21:58.569-05:00Blog Recommendation: Barriers, Bridges and Books on "NVLD and Us"Today I checked the blog <a href="http://bbandbohmy.blogspot.com/">Barriers, Bridges and Books</a> and found two surprises waiting for me.<br /><br />First, she gave a nice shout out to this blog and to the NDY blog.<br /><br />Second, the topic of the day was "Non Verbal Learning Disorder." <br /><br />As you might have noted, the terminology she uses is a little different than the one I used. Both "disorder" and "disability" get used. Not even the acronym is standardized yet - both NVLD and NLD are widely used.<br /><br />It doesn't matter, though. Whatever variation of the term we use, we're referring to that same general pattern of strengths and relative weaknesses on tests that purport to measure intelligence - sometimes supplemented by other diagnostic tools cherished by neuropsychologists and school psychologists.<br /><br />It's an "overcoming" story, but not in the sense we generally encounter in the disability community. It's a terrific "overcoming" story about her successful struggle to move past the incredibly negative "prognosis" that came with the news that her son had nonverbal learning disorders.<br /><br />Sometime soon I'll be adding a blogroll to this site, and Barriers, Bridges and Books will be on it. Terri is a dedicated activist/advocate here in Rochester, NY. And she's a very good writer. Take it from someone who reads a <span style="font-style: italic;">lot</span>.<br /><br />So - especially if you're a parent of someone with NLD/NVLD, please read the following blog entry today for a healthy reality check:<br /><br /><a href="http://bbandbohmy.blogspot.com/2009/03/non-verbal-learning-disorder-and-us.html">Non Verbal Learning Disorder and Us</a><br /><br />I might even revisit this entry in the future to share some of my own reactions, but I'm strapped for time today. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com9tag:blogger.com,1999:blog-4278015561752016263.post-55071174564645997682009-03-06T09:56:00.004-05:002009-03-06T10:19:59.624-05:00Speed bump or road block?In my <a href="http://hydrocephalusandme.blogspot.com/2009/03/hyperload-vs-overload.html">last post</a>, I used a tsunami metaphor to describe what life was like at the time. Things have changed a little since then. <br /><br />So, as a self-appointed champion of mixed and mangled metaphors (not to mention <a href="http://en.wikipedia.org/wiki/Alliteration">alliteration</a>), I'm going to talk about speed bumps vs. road blocks.<br /><br />On Tuesday night, my partner left to go to DC with 50 other activists from the <a href="http://www.cdrnys.org/">Center for Disability Rights</a>. I slept just fine that night and maintained my hyperfocus throughout Wednesday. <br /><br />After that, complications arose. The time of Diane's return was uncertain. It would be anywhere between midnight and just about any time thereafter. Being able to pick her up in that kind of scenario takes some planning on my part. I can't just sleep, get a wake-up call and hop in the car. As an additional complication, I try to regulate my sleeping schedule to keep migraine occurrences down.<br /><br />I have to wait at least two hours after sleeping before my reflexes and motor control have settled down to the point where driving is a safe activity.<br /><br />Unfortunately, I was unsuccessful in getting a nap in the early evening, managing no more than about 30 minutes of snooze time. At that point, it was about 10:30 pm.<br /><br />At that point, I didn't dare to try any more sleep. At about 11 pm, I got a call saying that - if they made good time - they might be at CDR by 1 am. <br /><br />Their eventual arrival was at about 3:00 am. By the time I picked Diane up, got home, helped her with her stuff and settled down for sleep, it was 5:00 am. I fell asleep pretty quickly, but woke up at 9:00 am.<br /><br />I was functional - for shopping, reading, eating and light cleaning - but not much good for much else.<br /><br />Reaching this point was inevitable. The question remained whether it was going to be a temporary speed bump, with me resuming my previous momentum, or a total roadblock - with who knows how long to struggle toward productivity again.<br /><br />The fact that I'm writing this post suggests yesterday was just a speed bump after all, with last night's sleep doing what was needed to get me to resume course.<br /><br />Wish me luck. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com0tag:blogger.com,1999:blog-4278015561752016263.post-69561718334699303532009-03-04T12:49:00.004-05:002009-03-04T13:12:37.682-05:00Hyperload vs. OverloadFirst, my apologies for people who have checked this blog for the long lag between posts. My last post dealt with overload and the impairment of function that goes with it.<br /><br />Why am I back and writing? My load hasn't decreased - it's <span style="font-style: italic;">increased</span>.<br /><br />Last week, a national story broke out that has put Not Dead Yet in the middle of media coverage - quoted in <span style="font-style: italic;">AP</span> stories, the <span style="font-style: italic;">Atlanta Journal-Constitution</span>, and <span style="font-style: italic;">Time Magazine</span>. If you're curious about the story and what my role has been in the coverage, you can check out the <a href="http://notdeadyetnewscommentary.blogspot.com/">Not Dead Yet blog</a> and read the posts for the last week. And there'll be more to come. A <span style="font-style: italic;">New York Times</span> reporter called yesterday. There was an appearance on Fox News, but I'll probably write about that separately in a little while.<br /><br />On top of reading the press coverage, gathering the facts of the national story, giving interviews to the press, I've been engaging in other related activities. I've been talking and writing with people who wanted to write letters to the editor. Registering a complaint about accuracy with the secretary of a senior editor of a national newsweekly. Answering and/or deleting hate mail. Working with Georgia activists (the current center of the national story) who want to organize a presence and response there.<br /><br />All of this came at a time when I was already in a state of overload. Instead of making it worse, a mental shift occurred, where I am focused, calm, amazingly organized, and able to function on just about any amount of sleep.<br /><br />I think I've moved from "overload" to what I have decided to call "hyperload." It's a state where the tasks and demands are so overwhelming and important a sort of Zen-like presence takes hold of my brain (OK - it's a Zen-like presence given to muttering obscenities).<br /><br />Metaphorically, it feels like riding a tsunami (yeah, I've seen those <a href="http://www.dailymotion.com/video/x8hff1_microsoft-people-ready-quicksilver_tech">annoying commercials</a> too). Moving fast, in control.<br /><br />For now.<br /><br />Sooner or later, this unnatural state will end because it can't be sustained any longer or the demands settle down. At that point, I'll be in for at least a day or two of brain-freeze. I'm crossing my fingers that a migraine isn't part of the payment.<br /><br />For now, though, it feels good and it's great for advocacy. And I'll no doubt be back to posting here more as well. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com2tag:blogger.com,1999:blog-4278015561752016263.post-42185874421849175202009-02-23T16:06:00.003-05:002009-02-23T16:27:14.829-05:00OverloadI should have seen this coming, because it isn't like this kind of thing never happens to me.<br /><br />I am totally overloaded and realizing I need to find a new equilibrium/pattern/rhythm to work.<br /><br />Over the past couple months, I've established a pretty good routine for myself. I have a regular way of checking news, blogs and websites for items relevant to the NDY blog - I also have some back-up topics if nothing comes to mind.<br /><br />Things have been going so swimmingly well that I decided it was time to expand my repertoire. So, first, I started this blog in addition to the NDY blog.<br /><br />Me being me, I didn't stop <span style="font-style: italic;">there</span>. At least for awhile, until it became entrenched in my work pattern. That would have been prudent. Sensible. It would have been <span style="font-style: italic;">smart</span>. <br /><br />Nope. I registered with <span style="font-style: italic;">Facebook</span>. There were very good reasons to do that. Disability activists from all over the world network there. It's also very popular at the moment, so if you want to build an organizational presence, it's a place you should go. <br /><br />I prepared. I read <span style="font-style: italic;">Facebook for Dummies</span>.<br /><br />I was not prepared for the reality that is Facebook. It is an informational assault on the senses, with little-understood applications being offered to me, a rapidly building list of friends in my network, etc. It is a flood of data - some of it relevant to my work, some of it interesting, some of it personally important because it concerns friends.<br /><br />To top it off, last weekend, a time I usually spend doing housework, catch-up and some DVR watching, was spent preparing for the Oscar Protest regarding the humanitarian award given to Jerry Lewis.<br /><br />I have spent a lot of today floundering through the information overkill, trying to figure out what to write here and at my other blog. Finally, now that the day is nearing an end, I've managed to come up with something, which I hope is a step or two higher than gibberish.<br /><br />As I said, this is not an unfamiliar place for me to be in. When I was younger, it took a lot less than this to overwhelm me - and I would (in a figurative sense) give up, drown, and sink.<br /><br />But if you've been through this enough times, eventually you find some ways to get back on your game. A few successes help beat off the drowning feeling (mostly).<br /><br />No doubt this is something that has to do with that particular grouping of assets and deficits that fall into that broad category known as "nonverbal learning disabilities." <br /><br />To me, it's "business as usual."<br /><br />Please stick around, though. I plan to stick with this and enjoy the readers who've visited so far. --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com0tag:blogger.com,1999:blog-4278015561752016263.post-71697730049702383252009-02-18T14:14:00.004-05:002009-02-18T15:21:35.201-05:00OutlierIf anyone reading the title for this post is expecting a review of <a href="http://www.amazon.com/Outliers-Story-Success-Malcolm-Gladwell/dp/0316017922">Malcolm Gladwell's latest book</a>, you're about to be disappointed.<br /><br />This blog probably won't see too many things that current or timely. In this particular case, it's the story of how I came to appreciate the concept on a personal level.<br /><br />For those unfamiliar with the term, <a href="http://en.wikipedia.org/wiki/Outlier">wikipedia has a pretty good - and short - definition for "outlier"</a>:<br /><blockquote>In statistics, an <b>outlier</b> is an observation that is numerically distant from the rest of the data. Statistics derived from data sets that include outliers may be misleading.<br /></blockquote>Almost 20 years ago, I was a student at <a href="http://www.brockport.edu/">SUNY Brockport</a>, nearing the end of my undergraduate coursework, majoring in psychology. One of my classmates was a woman about 13 years younger than me. She had mild cerebral palsy and controlled seizures. Except for the controlled seizures part (I've never had one), some of our motor issues were pretty similar.<br /><br />Our experiences in public school were radically different. During the time that I was in elementary school, what special ed existed in my city was totally segregated - and almost a guaranteed ticket to a sheltered workshop or day treatment center. <br /><br />Special ed was more established and better than that by the time my friend got into the system, but she still had to fight an uphill battle to convince everyone that she would - and should - be college bound.<br /><br />Anyway, we were friends. She approached me one day regarding a final project she was doing for one of her psych classes. The set-up, as I recall, had to do with pressing one button when a control light went on - then having to hit a different button when a different light lit up randomly.<br /><br />She wanted me to be one of the subjects. <br /><br />That surprised me. As I understood it at the time, my reaction time was kind of quirky. I was kind of aware that parts of my brain operated at significantly different speeds. A lot of the ones having to do with reacting to surprises were the slower ones.<br /><br />I objected on the grounds that I would skew the results of her project (not for the first time, I realized that the English language really needs the word "<span style="font-style: italic;">skrew</span>" - a combination of skew and screw - to describe experimental results that are just very very wrong).<br /><br />She wanted me anyway. She was emphatic and enthusiastic about it.<br /><br />Cheerful people wear me down. I gave in.<br /><br />I came in - I was her last subject. She asked me to hang out for awhile after the procedure.<br /><br />When she came out to meet me, she had her results plotted. She was excited and cheerful.<br /><br />"Well, I'm not going to use you, but this sure is interesting," she said.<br /><br />She explained, laying out the graphing of responses. Pointing to a big cluster of dots on the left of the paper, she explained that these were the responses to the "control" light. My responses lagged a little, but still managed to stay within the fringes of the cluster of responses.<br /><br />Then she pointed to a smaller cluster of dots to the right. She explained these were the responses of most people to the randomly generated light. Then she pointed a couple of inches to a small group of lonely dots.<br /><br />"These," she said, "are your responses to the random stimulus."<br /><br />I don't play video games, or any sort of "recreation" that depends on reaction time, coordination, motor skills. But the differences between me and other people seemed small.<br /><br />And on paper, they were, most of the time. <br /><br />Except for certain situations, where I become an outlier and <span style="font-style: italic;">skrewed</span> data.<br /><br />I don't want to give the impression this put me into some kind of funk. I hadn't changed, after all. I'd just been given a snapshot of some processes I was trying to understand myself.<br /><br />Besides, I was with a persistently and annoyingly cheerful person. One of the most annoying traits of cheerful people is their ability to infect others with their cheerfulness. --Stephen DrakeStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com2tag:blogger.com,1999:blog-4278015561752016263.post-16616354025915189102009-02-17T16:06:00.003-05:002009-02-17T16:31:58.784-05:00"Vegetables"Just a quick search with google yielded these:<br /><br /><a href="http://www.gabrielslife.org/hydrocephalus-stories/April-Castillo?id=350">Hydrocephalus Story: My Miriam Lynn</a><br /><blockquote>My daughter was diagnosed with hydrocephalus when I was about five and a half months pregnant. I was told she wouldn't live past the first few hours and would be a vegetable and would be connected to all the machines.<br /></blockquote><a href="http://www.hydroassoc.org/education_support/news/09-23-2008/innerview:-jodi-lawrence-s-hope-is-cure-for-hydrocephalus">Innerview: Jodi Lawrence's hope is cure for hydrocephalus</a><br /><blockquote>"Justin is a miracle. When he was born, we were told to expect a vegetable," she said of the premature, 1.5-pound baby. "My husband and I decided to research and learn as much as we could, and give him the best life possible. "<br /></blockquote><a href="http://www.gabrielslife.org/stories?command=show&id=328">Life with hydrocephalus</a><br /><blockquote>My life with this hyrdo began 46 years ago. The doctors told my parents that if i lived past 10 years of age i would be a vegetable (ha I'm not a cabbage). Anyway my parents fought for my treatment. the doctor didn't want to insert the shunt until my first birthday but they ended up doing it at 6 months of age.<br /></blockquote>By "quick," I mean that about ten minutes worth of effort on my part yielded these particular stories of fellow "ex-vegetables" with hydrocephalus. If I wanted to put some more effort into it (and probably will at a later date), I know of several more stories that don't use the "V" word, but include the prediction that the baby with hydrocephalus won't walk, talk, interact or think.<br /><br />"Vegetable" isn't a word that's in any medical dictionary. Doctors are free to attach any idiosyncratic definition to the word that they see fit. <br /><br />Personally, what I'm more interested in is are the motives of medical professionals who put this term forward in discussions of the prognosis and options for the newborn in question. These particular stories, even combined with my own "vegetable" story at birth, don't give us a lot to go on in figuring that out.<br /><br />However, these aren't the only ones that I've come across over the past 15 years. I'd suggest that the term "vegetable" is an opening gambit in which the medical professional wants to move the discussion into one of two areas:<br /><ul><li>Storage (e.g. institutional warehousing);</li><li>Disposal (death through withholding or removal of lifesaving measures)</li></ul>If that hypothesis is correct, it makes these stories - and my own - <span style="font-style: italic;">survivor</span> stories. "Vegetable" is the kind of word that can lead to a formidable body count - if applied to enough people successfully.<br /><br />More on this in the future. And if anyone out there reading this blog has their own "vegetable" story, I'd love to hear it. --Stephen DrakeStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com3tag:blogger.com,1999:blog-4278015561752016263.post-85517122256810474462009-02-13T14:26:00.004-05:002009-02-13T16:38:36.075-05:00Friday the Thirteenth Special: Mutant, Feral HydrocephalicsIn case anyone wonders why I made sure to put some very natural-looking baby pictures up on my blog, today's entry should give one good reason. By a strange coincidence, today is Friday the Thirteenth - and the opening of the newest version of the flick by the same name.<br /><br />It's a perfect day to share the quaint legend of Melon heads - there are three regions that have legends of monsters by that name, but the Michigan variety is most relevant to this blog. Today, while searching google for items related to hydrocephalus, I found this article on <a href="http://plumbot.com/Melon-heads.html">"Melon heads" from plumbot.com</a>:<br /><blockquote>The melon heads of Michigan are said to reside near the ruins of Felt Mansion in Laketown Township. According to one story, they were originally children with hydrocephalus who lived at the Junction Insane Asylum near Felt Mansion. The story explains that, after enduring physical and emotional abuse, they became feral mutants and were released into the forests surrounding the asylum. The Allegan County Historical Society asserts that the asylum never existed; however, the story has been part of the local folklore for several decades. Laketown Township Manager Al Meshkin told the <span style="font-style: italic;">Holland Sentinel</span> that he had heard the tales as a teenager, noting that his friends referred to the beings as "wobbleheads". Some versions of the legend say that the children once lived in the mansion itself, but later retreated to a system of underground caverns.<br /></blockquote>Now, to be honest, I have mixed reactions to this. Part of me, who loves movies like <span style="font-style: italic;">Hellboy</span>, thinks this is really really cool and wonders if I can get anyone to photoshop my baby pictures so I look like a feral mutant.<br /><br />There's another part of me, though, that worries about the impact of making monsters out of people with hydrocephalus. Part of that concern was validated by a short article in the book <a href="http://books.google.com/books?id=8Rv64wjtnnoC&pg=PA16&dq=melon+heads&ie=ISO-8859-1&sig=id8lGycvVqHqrYwuj04_ZPZn0HQ"><span style="font-style: italic;">Weird Michigan</span></a>.<br /><br />In <span style="font-style: italic;">Encounter with a Melon Head</span>, Kellie Topp-Bedrosian gives an account of being startled and scared by the appearance of a large-headed man on the grounds of the Felt Mansion, when she was on the grounds at night while in high school. When she told the story to her father, he told her not to return to the place and told her about the Melon heads:<br /><blockquote>Years ago the Felt family sold the mansion to a seminary and a small insane asylum was built on the grounds. It was then sold to the state of Michigan and the state turned it into a low-security prison. My father told me that the asylum specialized in patients with extra fluid in the brain, causing their heads to swell. After funding for the asylum was cut, most of the patients were "set free." Many of the Melon Heads had already developed an intense hatred for normal-looking people and chose to stay on the grounds away from society, and they built homes out of the tunnels that run under the mansion.<br /></blockquote>Here's how I see the story: Proper place for kids with hydrocephalus is institution. When the state cut funds and "set them free," these same people (not kids now) shunned society, sticking to the grounds and found tunnels to live in. And would come out occasionally to prey on "normal-looking" people, who they hated. Charming - I wonder how community inclusion of people with disabilities is going in that area of Michigan.<br /><br />Serious question: how would Topp-Bedrosian, or anyone else terrorized with these stories as a child, react when given the news that their own child had hydrocephalus? --StephenStephen Drakehttp://www.blogger.com/profile/02923726151589524620noreply@blogger.com5