Here's a "slam dunk" proposition. Spend $7 measley bucks, buy a malaria net and save a life. Click HERE to learn about the "Nets Save Lives" program.
Friday, April 25, 2008
Here's a "slam dunk" proposition. Spend $7 measley bucks, buy a malaria net and save a life. Click HERE to learn about the "Nets Save Lives" program.
I just read this book by Kelly McMasters - perfect timing for Earth Day..... It's a memoir about life on Long Island, in a town called Shirley - located far too close to the Brookhaven Nuclear facility to avoid illness and death and yet too far from the money of Montauk to matter to the powers that be (although they are next door neighbors.) Distance is often measure in social class and money, not miles. From Kirkus Reviews:
"Powerful...debut explores the author's happy childhood next to a controversial nuclear laboratory that leaked toxic waste into a Long Island aquifer. McMasters follows up this moving material with pages that delve into case-study numbers and scientific quotes ... Sincere and expertly researched."
As I've learned from my pal John Robison's book, Look Me in the Eye, the best non-fiction reads like fiction. This book was a terrific read. Engaging, informative and with a good story at its core. I'm sure Kelly and the people of Shirley, Long Island, New York, wish this book was fiction.
The story traces Kelly's nomad-like childhood with a golf pro Dad, who found the 18th hole in Shirley, New York, where Kelly ultimately grew up. Although Shirley was supposed to be a town of flowers according to its founder, it turns out to be anything but floral when the nuclear facility nearby wreaks havoc on old, young and in between.
I see a lot of similarities to our struggles in the autism world. The government and medical establishment turning a blind eye to the obvious problems growing around them and in them(literally inside the people of Shirley, as cancer ravaged so many.)
You can buy a copy HERE. Leave a comment and you're entered in the drawing for a copy! I'll post the winner later this week or over the weekend so check back!
Kelly was kind enough to answer some questions for me about her book. Here's our "interview."
When did you realize you had to tell this fascinating and frightening story?
The lab is a Superfund site, which is a researcher’s dream—literally hundreds of pages of documents available to the public. And after working on the project for three years, I was finally able to get access to do some research at the lab itself. There is a “Public Documents” room in their library (which is anything but—it was impossible to get access, and then they only allowed me 3 days there, during which I needed to show my approved badge four times to get in). The reports I found there felt like pieces of a puzzle falling into place. During that meeting I met with a representative from the lab who asked why I wanted to bring up all of these bad memories again. I explained that I was interested in telling the story from Shirley’s point of view. I was interested not just in the lab itself, but in the way the relationship between the lab and Shirley has impacted the town. She replied. “But there is no relationship between Shirley and the lab.”
At that moment, I realized how important this story as, because while the lab had the luxury to decide they did not have a relationship with the town, Shirley had no choice—their relationship permeates the drinking water aquifer, the soil, and the air. The town had a relationship whether they wanted one or not, and I think this scientific arrogance and the idea that the pollution and poisons our neighbor produces and releases into the environment are only the business of that neighbor is deadly.
How long did it take you to research and write the book?
I originally started circling the issue in a series of essays during graduate school. One of my favorite professors, Richard Locke, pulled me aside and showed me that the lab was functioning as this haunted house on a hill in each piece, and he said although I was clearly afraid of it, I had to look straight at it to understand what I was writing. He was absolutely right.
Along with my own memory, hours of written and tape-recorded interviews were supplemented with other research, including newspaper articles, scientiﬁc studies, reports resulting from Freedom of Information Act requests, and hundreds of pages of documents culled from the (not so) public reading room at the Brookhaven National Laboratory. My imagined scenes of the town’s founder, Walter T. Shirley, were informed by history books and archives. Five years after my discussion with Richard Locke, the book emerged from the printer.
You’ve really brought the story to life – I’ve heard that the best non-fic reads like fiction. You’ve captured that. How did you do it?
Thanks so much—that was an important goal of mine. When my agent and I were first showing editors the proposal, they were pretty split down the middle: half wanted me to remove myself from the mix and tell the story in a purely journalistic fashion, and half wanted me to take out all of the science and medical information and focus strictly on the memoir. I thought it was important to keep that mix in there, and I was lucky to find an editor and a publishing house that believed in the hybrid as strongly as I did. So many scientific studies had already been done that didn’t tell the whole story, and since we were dealing with the Department of Defense I knew there would be no Erin Brokovitch moment of finding the incriminating evidence (or, if there was a moment like that, I’d have to go into hiding!). And while I do believe the genre of memoir can be incredibly powerful, I felt that there were so many facts and figures to marshal, that pure memoir ultimately wouldn’t be able to do the story justice.
I love literary nonfiction because it is able to take the best of both the nonfiction world—fact-based, real human drama—and the fiction world—plot, character, suspense, landscape—and apply both brushes to a single canvas. I believe it is the most exciting genre to work in right now. Literary nonfiction has that frontier feeling of anything-is-possible because the borders are so malleable and flexible. My next book is absolutely going to continue to push the hybrid form.
Do you think because Shirley was not as affluent as other areas that your concerns were ignored?
Absolutely. And almost every national laboratory around the country has a town like Shirley nestled up next to it—a blue-collar dumping ground. The most frustrating message I kept getting was that Shirley didn’t matter—that our people were disposable. You can imagine how painful it is to be told that your family and friends, the people you love most, are disposable and that their lives are not worth as much as the Nobel prize or results from an experiment.
More damaging, however, is the fact that after decades of being sent this message, it was internalized. The people in town really began to believe that they were disposable and that somehow this was just par for the course, or what they deserved. That’s the saddest and most damaging part, I think.
How do you manage the anger you must feel at that folks who refused to listen for so long?
Wow. That is a really difficult question to answer. I think writing this, of course, really allowed me a kind of release. To be honest, I cried through so much of the writing. And I was mostly crying over things that happened twenty years ago. It is difficult to know where to put that kind of anger because it is displaced—people are already sick or dead, and there is no way to change that. And since cancer often takes 20 years to show up, there is no way to retroactively protect my friends, family, or even myself right now.
Most of my anger is wrapped up in this powerlessness. My mother’s character in the book acts as a kind of Cassandra—she sees where things are headed and tries to warn people, but no one listens. I think anyone who deals with environmental health issues must feel this way. But it is a faceless anger, which is the worst kind—since there is no one person to take it out on, it can really engulf your world, and I’ve also seen this kind of anger turn inward and engulf the person, which helps no one. I think the most constructive thing you can do is simply to try to accomplish one thing each day. Tell one person or write one letter or learn one more thing to strengthen your case so the next letter you write might be the one that shines the light in that deep, dark basement where no one wants to look. Translate that anger into something useful.
Thank you, Kelly!
Thursday, April 24, 2008
Wednesday, April 23, 2008
My colleague and friend Dan Olmsted wrote an article about autism and savantism for Spectrum Magazine. You can read it HERE. The following provides a taste:
Lately I’ve been trying to make sense of savants. What is the relationship between autism and the extraordinary abilities that, in a small percentage of cases, accompany it? Rain Man put both autism and savant skills on the map and may have created a bias toward believing that they go together a lot more often than they do.
I’ve written in Spectrum about my reporting that suggests the early cases of autism in this country can be connected to organic mercury – in fungicides and vaccines. Donald T., for example, lives in the aptly named Forest, Miss., in the middle of a national forest and not far from where mercury was first tested as a lumber preservative. (That may seem like a reach, but consider that Case 2 was the son of a forestry professor in the south, and Case 3 the son of a plant pathologist.)
Monday, April 21, 2008
Saturday, April 19, 2008
Sigh, wouldn't that make the most delicious opening line to a novel? You simply have to read more, don't you? Sadly, it's part of the arrest details of CNN reporter Richard Quest.
You can read more HERE at Perez. Natch.
Friday, April 18, 2008
I loved this guy:
I had some kind of fun. I snuck into this show:
U2's first tour! 03/06/1981 The Paradise - Boston, Massachusetts, USATwilight, 11 O'Clock Tick Tock, I Will Follow, An Cat Dubh, Into The Heart, Another Time, Another Place, The Cry, The Electric Co. / Send In The Clowns (snippet), Things To Make And Do, Stories For Boys, Boy-Girl, Out Of Control, 11 O'Clock Tick Tock, I Will Followcomment: Second of two shows that night.Jesus, I'm old.......
Last week I was at the JCC Manhattan for an autism event. (JCC, for those of you in large square states or states where you might have eaten a hush puppy for lunch, JCC is the Jewish Community Center.)
Beth Rosenberg planned the event. Her daughter Willa Rubin is a HuffPo blogger! How cool is that? She's 14! She also runs a Harry Potter Fan Fic site called 12 Grimmauld Place. Check it out!
You can read Willa's HuffPo pieces HERE.
Thursday, April 17, 2008
Marky Mark, who lost his job in February in a corporate slash and burn campaign, has a wonderful new job! And we can stay in our town, so I don't have to relocate the kids! So many of you stepped up to the plate with generosity that boggled my mind. I can't say thanks to everyone of you individually - but I can try to repay my debt of gratitude in other ways. Today, I made a donation to the Helping Hand Grant on behalf of all of you. From the bottom of my heart, thank you.
Autism Yesterday, The Movie.
This is a repeat post from http://www.ageofautism.com/ of David Kirby’s review of the film Autism Yesterday, premiering tonight in more than 140 venues around the world.
BUY THE DVD AT Amazon.
By David Kirby
At a time when Big Medicine, Big Government and Big Media are trying hard to make the vaccine-autism debate go away, along comes a quiet little film like “Autism Yesterday” to throw a wrench in the establishment’s best laid plans to stifle the pesky vaccine chatter once and for all.
Anyone out there still declaring that this debate is over, that medical science has fully exonerated mercury and vaccines, and that thousands of parents who insist otherwise don’t know what they are talking about, really should watch THIS film before embarrassing themselves further.
“Autism Yesterday,” a beautifully shot film with a stirring original soundtrack of softly strumming guitars and plaintive but hopeful songs, tells the story of five West Coast families who bucked all conventional wisdom -- and began to recover their kids.
In each story, we see clear before-and-after evidence of a child’s heartbreaking descent into the silent, baffling world of autism, and then their steady, sometimes miraculous progress back towards health, happiness, communication and, yes, recovery.
In each case, the parents explain how they turned to controversial “biomedical interventions” such as wheat and dairy-free diets, or the removal of heavy metals from the body, to treat their ailing children. And the film, in elegant detail, shows us exactly how far these kids have come.
Their progress stands in glaring opposition to all those “experts” who insist that neither mercury nor vaccines could possibly have anything to do with autism, and that biomedical intervention is nothing short of dangerous snake oil, bordering on child abuse.
Many of them, in the process, have denigrated, ridiculed and dismissed parents who are treating their children anyway. Such parents, the media tell us, are overwrought and hyper-emotional, they are desperate and distraught, confused and ignorant, even greedy and litigious.
But watch “Autism Yesterday” and you see and hear a different story – something I have come to know after speaking with thousands of parents in over 30 states: These tireless advocates for children are neither crazy nor stupid. Their thoughtfulness, intelligence, compassion and determination is what strikes us most.
Instead of slamming them, we should be listening very carefully to what they have to say.
One clear message from “Autism Yesterday” is that parents often know what is going on with their kids far better than the professionals. Many doctors dismissed them when they insisted their healthy children regressed into autism. Studies have proven the doctors wrong.
Now, parents are insisting that biomedical treatments, in at least some cases, can virtually make autism go away. And once again, the moms and dads are being dismissed, even laughed at.
But all the derision, scorn and snickering in the world is, to them, irrelevant. As one mother calmly explains about treating these kids: “If you don’t fix ‘em, who will?”
(Managing Editor’s Note: You can watch the trailer for Autism Yesterday HERE. The film will be making its premier in April, stay tuned for more information.)
David Kirby (http://www.evidenceofharm.com/) has been a professional journalist for over 15 years, and has written extensively for The New York Times for the past eight years. Kirby was a contracted writer with the weekly City Section at The Times, where he covered public health, local politics, art and culture, among other subjects. Kirby has also written for a number of national magazines. He was also a foreign correspondent in Mexico and Central America from 1986-1990, where he covered the wars in El Salvador and Nicaragua, and covered politics, corruption and natural disasters in Mexico. From Latin America, he reported for UPI, the San Francisco Examiner, Newsday, The Arizona Republic, Houston Chronicle and the NBC Radio Network.
Tuesday, April 15, 2008
Monday, April 14, 2008
Yup. C'est moi! Can you understand me? My tongue is planted firmly in my cheek here, I'm afraid I might be mumbling.
So - today Miss G took a bath. It's Spring vacation week so we had plenty of time to dawdle this morning. And tomorrow. And the next day. Ugh. Oops, sorry.
Miss G was in the tub. She's 11. She knows how to swim. I don't sit with her in the bathroom any longer. Next thing I know, she's downstairs. Dressed. Including the requisite undergarments for a young lady. I ran upstairs to make sure Bella hadn't jumped into the tub. Even if she had, Gianna had emptied the tub. Yup, my Gianna.
The kid who at three so out out of control that the neuro assured me she would be on meds by 6 for her "oppositional defiant disorder" was bathed, dried, dressed and ready to go. All by herself.
Boy, I sure am a crappy Mom for changing who my kid was, aren't I? I must really hate her.
This post has been brought to you by biomedical interventions. Thank you.
Those of you in the autism world know what I'm talking about you. Many of you hate your kids too, right? ;)
Ever Meet A Character from your Own Book?
Trooper Matt is quite handsome, I don't mind telling you. I wanted to ask him to turn around, show me his gun, take off the badge and let me feel it and on and on. You know, research. I'm a professsional writer, people. Matt is is not the fictional Rick Strohmeyer. As you know, "All persons appearing in this book are fictional and any similarities to real people are purely coincidental." Even that nasty neighbor chick who lives across the street from my protag. Uh huh...
Trooper Matt flies helicopters. He did not fly a "chopper" (ooooh, Kim uses the lingo!) to the event. He rode a motorcycle. Equally cool in my vanilla, minivan life. He has two sons, 10 and 7. And seems to be a damn good guy.
So yesterday a bit of my book came to life. And for once it wasn't just the autism!
Today marks the third anniversary of the Environment of Harm list created and moderated by Lenny Schafer. We owe Lenny a huge debt of gratitude. Thank you, Lenny.
Lenny also provides the Schafer Autism Report, an online newsletter that gives you the current autism news at a glance and a calendar of events around the world. If you are not a subscriber, please go to http://www.sarnet.org/ and click through to a paid membership. Lenny's work has been invaluable to our community.
From Lenny's letter to his 2100+ members:
Hello List Members,
Monday marks the third anniversary of this Environment of Harm list.
I am sad to report that this list and the exchange of information it
provides the community is needed now more than ever, despite every
intent to put this list out of business. Yes, it was my deepest hope
three years ago that the proverbial dirty-vaccine cat and autism mouse
would be out of the bag by now and that most of our time and efforts
would be towards treatment and treatment research.
The EOHarm list now over 2100 members strong; having completed a
breathtaking near 80,000 messages to one another, whew!
This list is sponsored by the Schafer Autism Report, which has a
20,000 readership and is the source of about half of the members who
In the event you never heard of it, the home page for
the Report is http://www.sarnet.org It is a daily newsletter digest
of autism news and information. It is 100% support by reader donations.
I believe that the readership of both this list, and the Report is a
large as it is, absent any internet marketing, because we are not
beholden to any advertisers, or big contributors, but by individual
readers who have come to trust what we have to say.
The agenda here is simple: we want the truth and justice for all our
children who have been damaged by vaccines, by any environmental
toxins and by all the disinformers at the CDC, pharma and others.
Saturday, April 12, 2008
By the way, see that Jimmy Dean Sunshine man? I love that ad campaign. The music, the tone, the creativity. It's fabulous. Although I've never bought a Jimmy Dean product. Nor will I. So for me I guess the campaign is not effective. But I do love the Sunshine man.....
From Dan Olmsted on Age of Autism.
More and more mainstream experts are standing up for the vaccine court and Hannah Poling and her parents -- and deserve our thanks and support. The latest is Dr. Bernadine Healy. Her bio from U.S. News & World Report, (HERE) where the article we're pointing out is appearing in the current issue: "Dr. Bernadine Healy is Health Editor for U.S.News & World Report and writes the On Health column. She is a member of the President's Council of Advisors on Science and Technology and has served as director of the National Institutes of Health and president and CEO of the American Red Cross."
Here's the beauty part from her column: "Pediatricians were concerned enough about mercury, which is known to cause neurological damage in developing infant and fetal brains, that they mobilized to have thimerosal removed from childhood vaccines by 2002. Their concern was not autism but the lunacy of injecting mercury into little kids through mandated vaccines that together exceeded mercury safety guidelines designed for adults."
So by definition, the former head of the NIH says people like Paul Offit*-- who calls it a mistake to take mercury out -- and organizations like the CDC, the World Health Organization and their ilk who are keeping mercury in flu shots in the U.S. and in standard immunizations around the world ... the former head of the NIH says they're lunatic(s).
That's about as harsh as anything we've ever said, isn't it? -- Dan Olmsted
An error in the US News report is that pediatricians had NOTHING to do with the removal of mercury from most of the childhood vaccine schedule. Mothers like Lyn Redwood and Heidi Roger counted up the mcg in the shots and started to raise holy hell over a decade ago. The AAP was forced to reluctantly came along for the ride and continues to drag its feet when it comes to childhood vaccine research and safety.
* Paul Offit is a doc at Children's of Philadelphia. He co-owns the patent to the newest Rotovirus vaccine called RotoTeq - the AAP just added RotoTeq to the ped schedule - 3 doses before one year of age. Cha-Ching!
Friday, April 11, 2008
Seven of us presented. Two of us were nypicals (that's John Robison's abbreviated word for neurotypicals.) We did a fine job, blah, blah. I read from my chapter in Embracing Autism. Kristina Chew read from her work in progress about how her son Charlie taught her to conquer her lifelong fear of swimming - a literal and metaphorical description of parenting a child on the spectrum. I got to meet her husband Jim and their son Charlie, a tall, handsome boy, almost 11 years old, who handled a very long day with aplomb.
The evening truly belonged to the adults and teens on the spectrum. I'd like to thank them for their insightful readings.
Jacob Artson: A teen in LA who speaks through assistive technology (typing) proving that being unable to speak has little to do with being unable to communicate. I owe Jacob an apology - I attributed a beautiful quote to him from the CAN! magazine Advances. He pointed out that his friend Mark Nathanson was the originator. Thanks, Jacob!
Amy Gravino: Amy is an adult with Asperger's who was in the documentary, "Normal People Scare Me." Amy read us a story about how she felt at school dances from 8th grade, when she danced with an imaginary partner to college, when she danced with and kissed a young man.
She's working on a book about dating issues for people on the spectrum, currently titled, "The Naughtie Autie." I think this is a very important book as the flood of youngsters with autism are growing into adolescence and adulthood - and unique coming from the female perspective.
ANY EDITORS, AGENTS, MENTORS READING THIS WHO WOULD LIKE TO ASSIST AMY WITH HER NON FIC PROPOSAL PLEASE CONTACT ME AT Kim Stagliano at G Mail dot com.
Jason Ross: Jason read his poetry to us, explaining that he feels he can tell you about himself better through the written word than spoken. Personally, I thought he did a fine job with the spoken word. He is charming. You can find his work at his website (most wonderfully titled) http://www.drivemomcrazy.com/.
Clifford Schumacher: Cliff wins the prize for the longest commute to the event. He flew from Albany to Newark! Cliff enrolled in Bard College in Massachusetts in their accelerated program, prior to graduating from high school! You can visit his blog at http://www.crimsonthought.blogspot.com/ .
Leigh Silver: Leigh loves baseball and is a natural performer. Surely there's a vaudeville connection in his background! He read a poem from his book, "Rhymes on First, Limericks on Second, I Don't Know the Stanzas." I bought a copy and I love how he signed it to me, "To Kim, Keep that happy attitude toward your girls." You can learn more at http://www.adaptationsonline.org/.
Tuesday, April 08, 2008
My daughter Gianna is in a remarkable regular ed 5th grade class. Each year, the 5th grade has to do a "Heroes" project. And there is an extension project where the kids do some sort of charitable work. Gianna's neurotypical pal I'll call "B" decided to run a Swim-A-Thon with the proceeds going to the Doug Flutie Jr. Foundation for autism. B's Mom is Teacher of the Year for the 5th grade, by the way. No small coincidence her daughter is such a neat kid. There are other kids who have taken a real shine to Gianna. Like J and C for starters.
These are Gianna's first real friends. They invite her to participate in events. They treat her as an equal - albeit one who needs some extra support. They include her. I love these kids. I love their parents for raising them so well. I love Gianna's school for making sure all the kids matter.
Sink or swim? Miss G's going to swim. I know it.
Wednesday, April 02, 2008
Literary Night includes Kristina Chew (autismland.com) Mothersvox (autismsedges.blogspot.com) and Kim Stagliano (http://www.huffingtonpost.com/, http://www.ageofautism.com/) who are moms of kids with disabilities who blog.
TODAY IS WORLD AUTISM DAY.
In 2003, Hawaii filmmakers Don and Julianne King realized something was wrong with their three-year-old son, Beau. Around age two-and-a-half, Beau started losing his ability to speak, his coordination, and was becoming disconnected from the outside world. Determined to help Beau, his parents brought him to the best doctors in the U.S. and took along a video camera to document the results. Two months later, Beau was diagnosed with Autism Spectrum Disorder (ASD).
In BEAUTIFUL SON, Don and Julianne take us on their journey through the landscape of this debilitating neurological disorder as they attempt to recover Beau from autism.
Along the way, through their research and personal interaction with various medical professionals, Don and Julianne come to believe the establishment has little to offer apart from advice of “good parenting” and behavioral therapy. Desperate to find help, they stumble upon a community of doctors and parents who are experimenting with alternative treatments and who are, they believe, successfully recovering some kids from autism.
Please contact your local PBS station to see if they have scheduled Beautiful Son into their programming. If not, ask them to! Learn more and order your copy of Beautiful Son HERE.
Tuesday, April 01, 2008
Do tune into CNN for lots of autism related into over the next few days, they have some excellent pieces that do not sugar coat the diagnosis. I like happy stories as much as the next gal, the J-Mac basketball story for instance. It's good to celebrate every success. But sometimes autism is portrayed as an exotic set of gifts. When in reality, for many people with autism, it can be many lumps of coal. Think about how you felt when you heard Patrick Swayze has pancreatic cancer. Your heart went THUD, right. You just knew what that meant. That's what my heart does when I hear again and again and again that another child has been diagnosed.
Tomorrow is "World Autism Day." I wish that were an April Fool's joke.
OK - let's move onto today's topic. THE FIELD TRIP!
All three of my girls are going on field trips today. Didn't you just LIVE for field trips as a kid? I'll tell you about a couple of mine in a mo'. First, the girls'. Mia is going HERE where she will see this:
That's Woolsey Hall, home of the Yale Symphony Orchestra. Pretty swanky, yes? My kid has cultcha!
Gianna and Bella are going to the movies to see THIS. Starring none other than autism advocate Jim Carrey, boyfriend of the energetic Jenny McCarthy! I love the theme, "A person's a person, no matter how small." Words to live by.
Geez, my girls are lucky. Their trips are a far cry from my seventh grade class trip to THIS JOINT. And I mean joint. That's MCI (Mass. Correctional Institute) Cedar Junction. It used to be called Walpole State Prison. It's a Max security prison.
For some reason, our teacher, who was most ironically named Miss Free (I can still picture her frosted pink lipstick and white blonde rat combed hair) took us to Walpole State for a scared straight kind of day. WTF?? Well, I might have had something to do with the tiny Catholic school's fear that it's students were going to the dogs. You see, in 6th grade I sort of F'ed up on another class trip. Um, my "boyfriend" (the kid who held my ankles as I won the sit up contest) brought a flask of
on a field trip. And some of these.
Yup. In 6th grade I drank booze and puffed on a cigar during a field trip to the Whole World Celebration at the Hynes Convention Center in Boston. Sister Omygodshesdrunk caught me red handed and liquor-breathed. I got suspended for a few days. Couldn't attend the Christmas bazaar that year, where my Mom had garnered all sorts of arts and crafts and costume jewelry to sell.
I was a trying child. Signed myself up for piano lessons in 1st grade and informed my parents they needed to buy a piano. Went to a new school for 8th grade (funny, that little Catholic school shut down after my 7th grade year) and was promptly elected Class President in November. I did my own thing. Wasn't afraid of authority. Forged my own path. Took matters into my own hands. Almost always came out on top too.
Did I mention it's Autism Awareness month?