Realistic Outcomes.- Fetal Alcohol Spectrum Disorders

September ninth was international Fetal Alcohol Spectrum Disorders (FASD) Awareness Day.  We have been using this as an international day of awareness since 1999.  The first year we focused on ringing bells to commemorate the day.  We tried to get the local news media to feature news articles on the disability.  Over the years, we have had a number of activities to draw attention to the disability.   One year Christine Gregoire the governor of Washington State filmed a public service announcement on the dangers of drinking while pregnant.

The media has changed over the past thirteen years.  This year many participants chose to post to Facebook or Twitter.  I posted to both places and started to read through the posts from other advocates as horror swept over me.  The messages focused on the lifelong nature of the disability saying, “People with Fetal Alcohol Spectrum Disorders may need lifelong supports in order to work and maintain relationships.”  I had to wonder, “What are these people thinking?”  No. NO. NO! That is not the norm for individuals with Fetal Alcohol Spectrum Disorders.

Perhaps I have been in the field longer than most of the other advocates.  Perhaps they have not read the long-term studies.  Perhaps they are living in fantasyland.  People with Fetal Alcohol Spectrum Disorders do not have the rosy outcomes the above statement indicates.  I suspect that many advocates hope for the best for the people they love.  Certainly, I know some individuals with FASD who are able to hold down a job and maintain relationships, sort of.  Dr. Ann Streisguth’s long-term studies indicated that some people with the disorder might be able to hold down a job, or maintain family relationships.  She did not find people in her caseload who were doing both.  It is theoretically possible.

The far more common outcome for people with FASD is not so successful.  Most of the young people I met twenty years ago are bumping along with a great deal of support.  Some are in assisted living, which works, sort of.  Some have a great deal of difficulty with drugs and alcohol.  Some are still in prison.  Some live in the community with constant support from aging parents and the government.  Most receive Social Security Disability payments.  Some receive Section 8 housing.  Most receive food stamps.  The government financial support is in addition to being in constant contact with a caregiver who serves as an external brain.

What is it about this disability that causes it to be so devastating?  The answer to that question lies in the nature of the brain damage caused by prenatal exposure to alcohol.  Humans have a small structure in their brains, the corpus callosum, that serves as the main right to left pathway for brain activity.  It connects facts with meaning.  Together with parts of the brain stem, it allows us to learn from cause and effect.  Both of these structures are vulnerable to prenatal exposure to alcohol.  Dr. Ed Riley at the Univ. of California at San Diego was the first to find the characteristic brain damage associated with prenatal exposure to alcohol.  Dr. Streisguth replicated his study.

This characteristic pattern of brain damage produces some predictable behavior problems.  Individuals with FASD cannot learn from their mistakes.  They cannot connect rules to behavior.  They just never develop adult level judgment and reasoning.  Most individuals with FASD possess the sense for safety of a three year-old.  Of course they have adult bodies and people expect them to learn adult responsibility, which is just not going to happen.  With our foster daughter the three-year-old judgment is a life threatening disability.  She absolutely cannot keep herself save around the general public.  She projects vulnerability.  Yes, she has the intellectual capability of working.  She is tired of being sexually exploited because she cannot repel predatory men.  She stays home and lives on the pitiful income the government provides.

There is another aspect of this disability that is very very difficult for people to grasp.  Perhaps some day I will find the magic words to express this better.  Most of the people diagnosed with FASD live life on the margins, receiving public assistance if they are lucky.  Many get free housing and food in prison.  The state pays and pays and pays through the criminal justice and welfare systems for this disability.  The individuals who have the disability pay and pay through heartbreak, abuse, poverty, loneliness and failure for their entire lives.  The industry that produced the product that causes the damage makes wonderful profits.  The liquor industry fought warning labels on their products.  They fight taxes to cover the cost of the damage their product causes.  They reap huge profits without consequences.  Perhaps those with FASD are right actions do not produce consequences—at least not for the liquor industry.  They did for the tobacco industry.  They did for the paint industry.  They do for anybody else who makes a product that causes damage when used in a legal and socially accepted manner.  After many years as an advocate in this field, I am tired of the heartbreak from watching the devastation caused by prenatal exposure to alcohol.  I am sick of the lack of appropriate response from our government and justice communities.

Freedom of Speech vs Freedom

By Delinda McCann Author Lies That Bind

A few weeks ago, several things happened to make me sit and think seriously about our right to free speech.

The first event occured when I decided I must un-friend a former colleague on facebook.  It sounds like a small event, but it troubled me.  The colleague had a habit of posting quotes, quips and cartoons that were demeaning to a certain group of people.  She applauded name-calling, critical-judgmental ideas, and the public use of words that I sent my children to their rooms for using.  The strange part of this event was that I didn’t particularly disagree with her views and values.  I was disgusted with how she expressed those views and values. 

I also felt that by continuing to accept this person’s manner of speaking and example of name-calling and put-downs as humor, I was accepting another issue. Demeaning speech sets a horrid example for our children.  If we can say anything we want even when it infringes on the rights and dignity of others, why cannot our children bully the kid with disabilities?  It makes the bully feel good and powerful. 

But this is the nature of freedom of speech.  My colleague was free to express herself any way she chooses.  If I don’t like it, I can walk away or unfriend her.  The problem is that we don’t always have the option of walking away.

Shortly after my uncomfortable decision to unfriend a colleague, Rep. Akin blessed us with his remarks about legitimate rape and women’s bodies.  Setting aside the insensitivity of his comments and my emotional reaction to his lack of empathy for victims of a crime, his comments about women’s bodies were outright lies.  Some of my friends tried to tell me he was trying to prevent abortions in making these comments.  What?  Does your perceived morality of your cause give you permission to spread lies?  Does the right to free speech include the right to use lies to influence the law of the land?  Does the right to free speech give a lawmaker the right to condone rape if the victim is not beaten within and inch of her life? Is that the free speech that is covered in the constitution?

How do you walk away from a lawmaker whose lies can influence laws that affect the most private parts of our lives and bodies?  Where does the right to free speech end, and violation of the rights of others begin? 

While women of the US were shaking their heads or fists over Rep. Akin, half-way around the world, in Russia a shock-rock band, Pussy Riot was on trial for trespass and exposing their privates in a church.  Many celebrities and the news media jumped on the trial as a freedom of speech issue.  What?  I saw it as a trespass and indecent exposure issue.  I agree with the principle of civil disobedience and have even participated it. However, even in a case of civil disobedience I would give the bystander who is offended by my actions or strongly disagrees with me the right to walk away.

After watching the security video of the Pussy Riot demonstration, it occurred to me that if this group of women had come into my church and performed exactly the same act, in Russian, which nobody would understand, my pastor would call the police, just before he had a major anxiety attack.  The women would be arrested, charged, and, if they did not make a plea-bargain, they would be tried.  Yet, the event was reported and supported as a freedom of speech issue unique to Russia, as if displaying one’s crotch in church was acceptable in “free” countries.  So what about the rule of allowing others to walk away?   In this case it is possible that visitors to the cathedral could cover their children’s eyes and leave the scene of...well…the scene, but the nuns and priests, who work there did not have that option.  Furthermore the bystanders had come to a private place, a sanctuary, where they ought to be able to reasonably expect a crotch-free opportunity to pray.

Freedom of speech is and should be one of our most cherished rights.  The problem with our current cult of free speech is that we allow freedom of expression to overshadow Freedom—with a capital eff.

How do we restore a balance of liberty for everyone?  We need to start thinking and questioning.  Is this person’s speech infringing on someone else’s rights?  Is this the truth?  Would I allow my child to talk that way?  Do others have the freedom to walk away if they disagree with what the speaker is saying or the way in which it is said?    

The abuse of free speech calls for outrage.  It calls for us to walk away or un-friend.  It calls for individuals to not only turn off their TV, but to write to the sponsors of shows that support lies and demeaning speech.  Most of all, it calls for each of us to stop and ask ourselves some serious questions about what we say, and how, and where we say it.