Dangerous Marginalization

Most of us have long abandoned the hope that every social problem can be engineered out of existence through the miracle of science, technology and education. But, it does not seem that those who represent us in government have. Before our state’s 2009 Legislative Session, I wrote my representatives imploring them to help adults with atypical neurological development, including FASD. Our state narrowly defines developmental disability as “any person age 18 or older who has been diagnosed as having significantly subaverage intellectual functioning existing concurrently with demonstrated deficits in adaptive behavior.” Like Marissa, most people with FASD have normal IQ’s. I received the following reply from one of my representatives.

As we enter the 2009 Legislative Session, a number of bills will be introduced to combat this growing problem. These bills will be introduced in to the K-12 Budget committees. While I do not sit on this committee, I will keep your views in mind should this legislation come to the floor for a vote.

Uh, thanks. I am just a little confused though. How in the world is my adult daughter going to benefit from programs in a K-12 budget? This kind of thinking reflects society’s ongoing belief that there are no adults living with FASD; we have educated and medicated away their atypical brain development. Or, they are permanent children who never need employment or housing, never enter a sexual relationship, never have children and most importantly never have to deal with aging or dead parents. Their caretakers live eternally providing their every need and acting as their external brain. Utopia can emerge as planned! I took comfort in the fact that at the very least the author of the letter, perhaps an aide, understood that I was concerned with Fetal Alcohol Spectrum Disorder. I wasn’t able to make it to the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) Day At the Hill. Maybe my letter will still have an impact when the senate is voting on this year’s budget.

Adults with atypical neurological development, developmental disabilities and mental illness are marginalized. They don’t fit neatly and cleanly into the goals we have for our country. Sometimes, I am saddened when I read the newspaper. I am often deflated when I read the comments that readers send in to a story. Hearing a talk show in which a listener calls in sometimes makes me bristle. It doesn’t take long for marginalization to make its way into public policy and rest there for generations.

Most recently, Dr. Michael Wilkes wrote:

At a recent seminar, medical students wondered about our society’s priorities. One student recounted how she had recently seen several women who were having their second, third or fourth baby, all born with fetal alcohol syndrome. Another told of drug- addicted women who were unable to stop using drugs, even though they knew it would affect the outcome of their babies.

Another student raised her hand to ask if perhaps women should be required to have a license to reproduce. She wondered if the ability to have children should be a right or a privilege. She acknowledged that in our country, women have a right to prevent getting pregnant, but perhaps giving birth shouldn’t be a right but a privilege (emphasis mine). ~ Inside Medicine: Octuplets case stirs debates

I stopped short when I read again that there are people out there who really, truly believe that reproduction is a privilege that is granted by the state and can be taken away. Is this student really suggesting forced sterilization and forced abortions for those considered unworthy to reproduce? Is our society moving into a era of neo-eugenics?

Last year, shortly after the birth of Barbara Gamble’s sixth child, the Canadian government came into the hospital and took legal custody of the child. Barbara has been identified as an unfit mother. Her IQ is borderline and a psychiatric evaluation suggests that, while she is capable of learning basic parenting skills, she probably would have trouble applying these skills on a day-to-day basis. Barbara has never been allowed to parent any of her children. Barbara is described by social workers as cynical and distrustful. “The huge chip on Barb’s shoulder towards anyone who doubted her capabilities was crushing her chances.” Because apparently if she were someone more worthy of parenting, when the government took away all of her children she would automatically say, “Thank you. I realize you are doing this for my good and the good of my children. I am eternally indebted to you.”

Parenting is not a right.  It is a privelege that can be revoked by the law.  Get over this natural right crap. ~ Government Seizes Newborn from Mentally Disabled Mom 22 Hours After Birth

Still, I suppose a random comment from a medical student or a common citizen shouldn’t really bother me that much. But, this does:

LaBruzzo considering plan to pay poor women $1,000 to have tubes tied

He said his program would be voluntary. It could involve tubal ligation, encouraging other forms of birth control or, to avoid charges of gender discrimination, vasectomies for men.

It also could include tax incentives for college-educated, higher-income people to have more children, he said. ~ state Rep. John LaBruzzo, R-Metairie, LA

Good thing he is a state and not a federal representative! Let’s forget for a moment that race and class are intimately tied in the US. The average black family earns 58 cents for every $1.00 a white family earns and black families are over represented among this country’s poor. This program is inherently racist. What is LaBruzzo saying? Take away his feeble attempt at being politically correct and what he has just said is, “Human taxpayers are valuable because  they are agents of the state, contributing to society’s coffers. Human tax burdens are not valuable — no matter what their race.” Did I get that right?

Finally, is this really and truly the kind of society we want to live in?

Or… Eugenics as a social movement occurred about the same time as the Depression Era. Now that our country is facing economic crisis is our desire to eliminate the underclass just a symptom? When there is plenty, do we have a “burden for the poor” that somehow, sadly converts in our collective conscience to the “burden of the poor?” With the completion of the Human Genome Project and prenatal screening I suspect the atrocities that could occur in America can mirror and surpass those of Nazi Germany. Mind your thinking!

Interesting but only peripherally related article: The Autism Rights Movement