Monday, January 23, 2012

A Collusion of Secrecy


            A week or so ago an article was posted to one of my Fetal Alcohol Spectrum Disorders (FASD) lists.  The article was about another chemical, a carbon tetrachloride derivative, that causes brain damage in unborn children.  The group started a rather macabre game of listing all the chemicals that cause brain damage during gestation.  Of course for this list, alcohol was at the top followed by tobacco and caffeine.  As the common offenders were listed, I had to think hard to remember the fungicide that was used on cherries to keep them from molding as soon as they were ripe.  We went through the polyvinylchlorides (PVC).  The list was quite impressive for a group of adults who were just recalling names off of the top of their heads.

            When the game was over, I made the comment.  “It is a wonder that so many people turn out okay when babies are exposed to so many things.”

            I told my husband about the game and my observation about so many people turning out just fine.  He gave me a blank stare as he thought about my story.  He grunted, “I wonder if that is why so many things do go wrong in society?”

            I thought then about the obvious problems of autism, ADHD and even bipolar disorders.  I thought about the number of children in our classrooms who are on medications so they can focus enough to learn. 

            I am well aware that Ann Streisguth Ph.D. is correct when she talks about those with a diagnosis being only the tip of the iceberg.  We know we have an unprecedented number of children born with autism and ADHD.  How many more children do not function as well as they should due to prenatal exposure?

            When things go wrong in our society how often is it due to the inability of a person or group of people to process information between the right and left sides of the brain?  How many people are unable to solve the problems of their own budgets because their ability to comprehend math has been compromised?

            We see the obvious problems of brain damage when individuals touch our schools, our criminal justice system, our welfare systems, and child protective systems.  I can only wonder and shudder over the number of people who will never reach their potential because of prenatal exposure to a soup of toxins.

            The solution to the problem sounds fairly easy.  We need to develop a culture of protecting pregnant women from the toxins that we encounter everywhere.  The solution is not easy. 

            Fetal Alcohol Spectrum Disorders have been recognized for centuries.  Aristotle described the problem.  The need to abstain from alcohol during pregnancy was common knowledge in the late 1800’s.  “Modern” medicine has been inclined to dismiss the writings of Dr. Stevens in the late 1800’s as “unscientific.”  Drs. Smith and Jones described FAS in the early seventies.  Since 1972 researchers have produced a definitive body of research detailing the effects of alcohol on the developing brain. 

            Why with our body of research detailing the effects of toxins on the developing brain do we still see children being born with brain damage from their prenatal exposure to toxins?  Why can’t we get the message out to women to avoid certain situations and substances during pregnancy?

            The answer to that question lies in the relationship between lobbyists, big money and our political institution.  If a politician says what needs to be said about alcohol and birth defects, that politician’s career will be ruined.  Our politicians cannot get elected without big money.  They cannot offend the liquor industry, or Monsanto, or Dow, or any of the other big companies that contribute to their campaigns.  So we see a collusion of secrecy that prevents our government from taking the action it needs. This collusion of secrecy is also protecting government sponsors from litigation related to the damages their products cause when used in a legal, responsible manner.



Wednesday, January 18, 2012

Why is SOPA/PIPA so bad?

            Since some of the big internet sites like Reddit and Wikipedia are going black today, Jan. 18, 2012 to protest the SOPA/PIPA bills, I thought I would take a few minutes to explain why these bills are important to those who are not interested in any way in downloading pirated music or videos.

Background

            The bill is really unnecessary.  We do have copyright laws.  We may need to extend those same copyright laws to cover international web sites.  SOPA/PIPA adds another layer of law that is not necessary.  This proposed legislation attempts to make it easier to shut down a website that engages in pirating.  In fact offended corporations can do this without due process.

            One of the worst provisions in the law, will exempt service providers from liability for promoting pirated material if they immediately take down a site when they receive a complaint.  The complaint does not have to come from a court order.  Just Cause is not a firm concept for taking down a site either. 

            As I understand the bill, anybody can complain about the content on any site to the service provider.  The provider who really is in no position to judge whether or not a site is really offending copyright laws will need to remove the site in order to protect themselves.

            How this bill would work for my husband who is a partner in a small tax accounting firm.

            My husband’s firm has a web site.  It has pictures of the staff.  It talks about each person’s specialty.  They have some basic tax information and Frequently Asked Questions.

            A quick reality check tells me that the possibility of the site for my husband’s business being maliciously attacked is very low to non-existent, unless someone, anyone gets angry with them.

            How this would work for my web site for Lies That Bind.

            I cannot think of any scenario where my web site for my book Lies That Bind can be legitimately attacked unless I tried to move the site to a different server.  Who owns the pictures and artwork on my site?  Me or the web designer?  I probably would not try to move the site without a complete make over out of respect to the web designer.

            However, I wrote a book that has an adulterous relationship at the center of the story line.  Can I see some fruitcake searching the internet for smut and complaining to service providers about pirated material on my site for Lies That Bind?  Sigh, unfortunately, yes I can see fruitcakes doing anything.

            The reality is that the probability of trouble with this web site being attacked is relatively low to non-existent.

            How this would affect my advocacy?

            I am an advocate for people with mental health disorders and disabilities, particularly the disability related to prenatal exposure to alcohol.  I put up the very first web site on Fetal Alcohol Syndrome.  The site combined research with family stories and experience.

            The great, great grandchild of my original site is still on the internet.  It doesn’t look much like the original.  I don’t have anything to do with it.  It still contains research material and the collective family experience.

            The message is the same as when I first started.  “This is what Fetal Alcohol Spectrum Disorder looks like from the perspective of researchers and families.”  An important piece of the research is based on work by Ann Streisguth Ph. D.   Her study on social drinking found no safe level of alcohol consumption during pregnancy.  Over and over the reputable researchers have found no safe level of alcohol consumption.  The rule remains, “If you are pregnant or planning to get pregnant do not drink alcohol.” This is the rule presented by reputable, research-based sites.

            Of course my former site is not the only place on the internet that discussions of Fetal Alcohol Spectrum Disorders occur.  Everybody in the disabilities field has a site on FASD.  Family members and advocates have started sites with resources for families and caregivers.  They list conferences and organize awareness campaigns.

            I have been an advocate, teacher, and caregiver in my field for over forty years.  I have testified at state senate hearings.  I have published articles.  I served on the state disability advisory committee and other committees.  I have done workshops.  I have met the liquor lobbyists in the halls of our capital.  I know the opposition.

            Actually a liquor lobbyist stepped on me in the hall in our state capital.  I watched as another lobbyist pushed my boss into a wall.  These guys do not play nice.  They are really, really not nice when someone mentions in public the idea that their product, when used in a legal manner, causes brain damage in unborn babies.

            Do I think the SOPA/PIPA bill will have an effect on advocacy for people with disabilities?  Yes!  If this bill passes and two weeks later, I can find any reputable research-based web sites on Fetal Alcohol Spectrum Disorders still on the internet, I will be shocked and surprised.  FASD is just one example in a whole array of disabilities that are vulnerable to attack.  I am certain that the biggest losers if this bill passes will not be those who pirate music or videos, but those who support and advocate for individuals with disabilities and mental health disorders.

Saturday, January 14, 2012

My January 14.2012 Signing


January 14, 2012

Stories from my signing at Mostly Books in Gig Harbor

I’ve decided I like signings.  I had a good turnout for today’s signing despite football on TV and nasty weather.  It is going to snow any minute.

Of course I like it when people buy my books, but the best part was getting to visit with people.  Two of my grade school friends came.  It was good to connect with them.  It was interesting that my two school friends fit right in with the people I work with and my extended family. 

We discussed a new monitoring system for children with autism that a colleague, Vicki McKinney helped coordinate with the local police.  My cousin commented on the value of the system while she was sign interpreting for a friend she brought along.  My childhood friend, Melyn told how valuable the system will be for seniors with dementia.

The topic of my next book, M’TK Sewer Rat, came up.  I told one story from President Jake’s childhood when he lived in a slum.  His first job was trapping rats in a shrimp trap his uncle gave him.  He sold the rats to Mr. Wu.  At this point in my description of my new book, the bookstore was deadly silent while everybody took in the meaning of what I just said.  It was Vicki, who burst out with, “Delinda! Only you!”

The next topic of discussion was the details of my research into eating rats. I explained that I knew the basics of butchering rats and that they would be best if boiled first.  My childhood friend Melyn, who once horrified me by trying to treat my scratched leg with spider webs, insisted that I needed to personally test my understanding of butchering and cooking rats.

After my horror over the discussion about me butchering rats, I redirected the conversation to my research in Victoria BC.  Some of the scenes in Lies That Bind are set in beautiful Victoria BC.  I explained that Victoria represents my preferences in research topics.  Everybody got a kick out of me finding a real estate company named Pemberton-Holmes.  I assured them that I did not make up such a perfect name for my book and that the agent I talked to was extremely helpful in telling me the most likely places for my teenage characters to visit.  She was able to direct me to an area of small farms right where I needed one.

I further explained that my research for Lies That Bind included visiting every dress shop in Victoria until I found the perfect dress for my heroine to wear to a dinner party.  Of course I had to buy the dress.  I may need to visit Connie’s Petites frequently during my research for my third book about Jake and Celia.

I am thankful for the opportunity to connect with some old friends and meet some new friends while being able to talk about books.

Wednesday, January 4, 2012

Challenges in Marketing


Challenges in Marketing


            As a newly published fiction writer, I am facing some real challenges in marketing Lies That Bind.  Let’s face it.  I am a Social Psychologist.  I’m interested in most aspects of social institutions.  Yes, I wrote a love story, but it wasn’t a formula love story.  That love story was set in a strong social setting.  Part of my motivation was to give people caring for loved ones with disabilities a message of hope and affirmation.

            My publisher classed the book as general fiction.  A scientist from England classed the book as a techno thriller and romance.  A friend connected to the state department thought it was excellent political commentary on the conditions in third world countries.  It is also an excellent depiction of the position people with disabilities hold in society whether it is North American or buried deep in a third world country.  A fellow poodle owner loved the dogs and insisted that hers was just like the dogs in Lies That Bind.

            I’ve had to explain to a few people that my portrayal of President Jake’s libido was accurate.  A charismatic man of his age in a position of power, responsibility and high stress is going to seek sexual release more often than most of our husbands.  I laugh and confess that yes, once upon a time I taught Dirty Two-thirty—Sociology 230, sex ed.  Hint:  This is why so many politicians get caught with their pants down.  My experience teaching that class helped with writing the sex scenes.

            As I try to market, I keep getting forced toward a specific gender.  My video is definitely romantic.  I don’t want to loose my caregivers by insisting the book is a romance novel.  What about the techno-thriller types?  I thought the book would appeal to women more than men.  I did include helicopters, explosions, football and sex just to capture the male audience.  I get way more enthusiastic feedback from men than from women.  Men love the politics.  They love the techno-mystery.  I suspect they identify with my strong male hero, President Jake.

            So, at the end of the day, how am I going to market this work?