Designer Children...Selective Abortion and A Search for the Perfectly Abled Child

     

     There is a social issue of increasing complexity which is born out of modern medical technology, a technology which becomes more sophisticated and refined by the day and  condemns disability to an increasingly insignificant portion of our social milieu. I refer to prenatal testing and selective abortion of the assumed disabled fetus. I also refer to an even more troubling technological phenomenon, PGS (Preimplantation genetic screening). In the latter case, embryos which are fertilized in vitro are screened by karyomapping, and a variety of many other genetic mapping techniques for the detection of genetic abnormalities prior to actual implementation in the uterus. Only a cell cluster free from genetic concerns is implanted. The latter form of genetic screening can employ a variety of techniques to detect generic aberrations after conception. Why? My assumption, based on data, is to abort or terminate pregnancy or to preclude implantation of any embryo which gives evidence of potential handicapping conditions after birth.

     I am neither inflexibly nor dogmatically  pro-choice nor entirely pro-life.  My beliefs do not stem from any religious or political influence.  I believe the development of prenatal and preimplantation genetic screening is a  more significant issue  than simply the right of a woman to control her body and to choose. I have a sincere and abiding issue with the underlying notion and unspoken process of selective abortion based solely upon the real or potential disability of the child. Eric Parens and Adrienne Asch (Prenatal Testing and Disability Rights) make this distinction that I believe is quite clear: " ...most abortions reflect a decision not to bring any fetus to term at this time; selective abortions involve a decision not to bring this particular fetus to term because of its traits." My moral and ethical issues arise from selective abortion because of the underlying societal message: the implicit de-valuing of the disabled and the handicapped.

     Andrew Imparato of AAPD (American Association of People with Disabilities) wonders how progressives got to this point. The new eugenics aimed at the disabled unborn tell the disabled who are alive that "disability is a fate worse than death," he says."What kind of message does this send to people living with spina bifida and other disabilities? It is not a progressive value to think that a disabled person is better off dead."

     Is it fair to assume that our society views the disabled as a burden? Is it presumptive to assume that the disabled are a fundamentally unhappy, suffering lot? Is it appropriate to assume that disabled people are of little redemptive value in a society which values productivity? Is it right to assume that disability is the cause of familial strife, divorce, poverty, alienation of other family members? Is it appropriate to assume that disability needs to be eradicated?  Are any assumptions about disability appropriate at all?

     Former U.S. Surgeon General C. Everett Koop, who worked for years with severely deformed infants as a pediatric surgeon at Philadelphia's Children's Hospital, commented that...
"It has been my constant experience that disability and unhappiness do not necessarily go together.  Some of the most unhappy children whom I have known have all of their physical and mental faculties, and on the other hand some of the happiest youngsters have borne burdens which I myself would find very difficult to bear. Our obligation in such circumstances is to find alternatives for the problems our patients face. I don't consider death an acceptable alternative. With our technology and creativity, we are merely at the beginning of what we can do educationally and in the field of leisure activities for such youngsters. And who knows what happiness is for another person?"

     Yet, it appears that prenatal testing and preimplantation genetic screening is leading to a slow, steady eradication of genetic and chromosomal disabilities.  Available data, depending on the source, indicate that 85-90% of screens for Down Syndrome result in terminations; 95% of screens for cystic fibrosis result in termination of pregnancy; 70-75% of screens for Spina Bifida result in terminations; 90% of screens for Tay-Sachs result in abortions.  Common syndromes which are identified by prenatal screening also include, neural tube defects, a wide array of chromosomal and genetic disorders, sickle cell, Fragile X, cystic fibrosis, the Trisomies, Duschene muscular dystrophy, Rett's and an array of 400 anomalies.  Doctors and clinics are loathe to track abortions resulting from potential disability screens.  It is the silent epidemic in the U.S. and the U.K. and reminiscent of the eugenics of the earlier parts of the past century.  The perfect child is highly desirable and the message to the disability community is that they are "lives not worthy of life."  In the actions of many, deeply rooted beliefs are revealed.

       The roots of eugenics are deeply imbued in the history of the majority.  Little doubt exists that Greeks sacrificed the disabled, early Church fathers (Aquinas) believed that ensoulment occurred somewhere with the the first three months after birth.  The early 20's in the USA brought about involuntary sterilization of the "feebleminded".  Inter-racial marriages were forbidden for many years and the prohibitions formally abolished in the 60's.   In the 40's, the Reich embarked upon the extermination of the disabled: 410,00 people were killed at Aktion T-4 (200,000 hereditary feebleminded, 80,000 schizophrenics, 60,000 epileptics, 20,000 people with physical deformities, the remains thousands who were blind, etc).  This cleansing occurred in a four year period of time and world looked away with profound indifference.

       Now, 2012, and times, attitudes, and the propensity for indifference remains.  Selective abortion and selective preimplantation strategies thrive without a loud challenge and much public discourse.  In "Disability Rights and Abortion," Marsha Saxton clearly states, "The message at the heart of widespread selective abortion on the basis of prenatal diagnosis is the greatest insult; some of us are "too flawed" in our very DNA to exist; we are unworthy of being born...fighting for this issue, our right and worthiness to be born, is the fundamental challenge to disability oppression; it underpins our most basic claim to justice and equality ---we are indeed worthy of being born, worth the help and the expense, and we know it!"   Of course, prenatal screening is  also problematic in our very conception of parenthood itself,  rooted in the fantasy and fallacy that we can procreate "the perfect child" ... a veritable trophy on the mantle of parenthood.
       How has this trend developed and been accepted by so many?  I believe that a partial answer lies in the concept of "the banality of evil" as first espoused by Hannah Arendt.  She develops the thesis that the greatest evils in history were not executed by fanatics or sociopaths, but rather by ordinary people who bought into the premises of the state, other philosophies (ie. Singer), and even the medical establishment.  Those people participated with the view that their actions and behaviors were the norm.  "Doing things in an organized and systematic way rests on "normalization."  The ugly, the degrading, and the unacceptable are routine as "that's the way things are done." (Herman, Edward )

       I believe that it is appropriate that the disability community take a clear stand on preimplantation and prenatal screening and selective abortion based upon a genetic anomaly.  I believe that the indifference of the medical profession, genetic counselors and society allows parents to choose selective abortion as if it were the right thing for the child, the family, society and the human race.  Attempts to eradicate genetic based disability is unjust, not only for the child but for society and does nothing positive but denigrate the value of humans who happen to be disabled.  I have found little value in genetic testing, at this time, unless certain conditions, like congenital heart defects, etc. can be corrected in the developing fetus in utero. Indifference reduces the disabled child to an abstraction...nothingness.  The time to effect this exponentially exploding trend is NOW!  Silence is no longer an option.  My opinion only.....alternate views are certainly welcome here.

     There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest.
     Elie Wiesel


UPDATE: 2/26/2012 Selective abortion gone wrong....HERE, acutely disturbing!

"Tiergartenstraße 4"

Life Lessons From A Fish.....My Conversion

Jones Pond, View from our deck..

       We live on a pond.  We have a fairly complex disabled kid to care for.  My goal in life is to give him the best life possible with the most loving care and still maintain a sense of sanity. Reflections on sanity brought me to childhood memories of fishing and the peace and quiet of these experiences.  So what other way to re-capture that place of serenity than to get a boat, pole and sundry types of gear and to fish in the early morn or at dusk on our pond.
        
        I thought too much lately about converting people to embrace the land of disability.  I thought too much about the past blogs: saying the right thing to the right person at the right time with the right words...then perhaps the story about embracing the disabled would resonate.  My goal was to stop thinking and float around and fish.  This was intentionally paced to be far from a mindful experience...all I wanted was to catch fish and throw them back.
       
        Well, I met my proverbial match in the first fish I caught one evening ... a bluegill, a small crap fish.  She/he swallowed my worm as well as my hook and I couldn't free the critter without ripping out its guts.  I just cut the line and threw it back in, well aware it wouldn't survive.  I also put away my pole and gear and swore I would never fish for fun again.  Mind you my reference is to fishing for fun and sport and not fishing for dinner.  The fish talked to me...it was the right fish, at the right time, with the right words,  and in the right place.  My behavior would be altered forever.  I saw myself as a brutal killer.

        Many people who fish for fun claim that fish are incapable of feeling pain, that the hook causes no discomfort.  Of course, when a hook has ripped through a delicate mouth, they trash, struggle and fight...they slowly suffocate out of water.  Their struggle indicates an aversion to pain and a strong will to survive.  I thought of severely disabled people, struggling daily to survive not unlike a fish out of water.


       I learned in a split instant a deep lesson about fragility, about an indomitable spirit to survive, about total dependence on another and on the other's treatment of them.  I learned about pain, about helplessness, about the look of despair.  I learned about struggle, about the need to be free, about the cruel domination of others.  I learned what it's like to be a insensitive bully.  In a moment, a torrent of emotion and a flood of knowing filled ever fiber of my being.  I learned from a fish.  I really feel like a shit and all I can do is to resolve to never do this again.


       The right person or fish, the right word, the right place, the right time...I would hope that this experience is not reserved only for the initiated.  I hope that it is a step to a higher level of consciousness and a higher degree of appreciation for the fragility of life.  In a way, the fish was like jesus...giving up life so that others may live with a higher consciousness.  I hope this isn't sacrilegious, but there are stories about jesus and fish in the book.


       I learned about life from a fish...all you have to do is look and listen!

Right place, right person, right time, right words...behaviors can change.

        

We Are Sisyphus

      In 1942, Albert Camus, the French existentialist, wrote The Myth of Sisyphus.The final chapter compares the absurdity of man's life with the situation of Sisyphus, a figure of Greek mythology who was condemned to repeat forever the same meaningless task of pushing a boulder up a mountain, only to see it roll down again. The essay concludes, "The struggle itself...is enough to fill a man's heart. One must imagine Sisyphus happy."    


       In The Upside of Irrationality Dr. Dan Ariely describes an experiment that tests how people respond when the meaning of their work is diminished. The test condition is referred to as the Sisyphusian condition. The two main conclusions of the experiment are that:

• people work harder when their work seems more meaningful;
• people underestimate the relationship between meaning and motivation.

       This epic myth and Camus' interpretation resonate with me as the parent of a severely disabled child/adult.  Meaning is crucial to the ongoing commitment to care and to care with enthusiasm and commitment.  That care is clearly similarly analogous to rolling the rock up a hill, to making great progress and strides forward and to have the rock slip back down.  We balance increased comfort, increased development, increased presence with consecutive regressions...respiratory difficulty, spasm, contracture, rigidity.  The pendulum swings back and forth as scoliosis diminishes, hips sublux; as hips normalize feet rotate.  Today breath is normalized, tomorrow it is shallow and raspy, the next day, normalized.  Steps forward and steps backward.  The persistence of the journey must continue.  Our commitment to his therapy must be unwavering despite the soul weary residuals.  The force on the rock cannot be mitigated by circumstance.  Our meaning comes from the "work."  Nothing else matters.

In that daily effort in which intelligence and passion mingle and delight each other, the absurd man discovers a discipline that will make up the greatest of his strengths. (The Myth of Sisyphus)

   

  And, so, as parents of severely disabled children, meaning comes not from getting on with our lives; it comes not from making sure that we have a life; it comes not from closely knit circles of family and friends.  Nor does it come from great literary contributions to humanity, nor from scientific discovery, nor the accumulation of money and possessions.  It comes not from curing our son or daughter nor from having the world appreciate the "miracle" of our child, nor from teaching others the value of caring and the sins of indifference.  Meaning does not come from our advocacy or our advice to others; it comes not from sharing our wealth of accumulated knowledge of disability.  Our meaning comes from the unwavering, unceasing rolling of the stone up the mountain, day after day, year after year for as long as it takes.  We have a privilege of meaning that so few others have the opportunity or desire to pursue.

The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor. The Myth of Sisyphus The Myth of Sisyphus.

Opinions differ as to the reasons why he became the futile laborer of the underworld. To begin with, he is accused of a certain levity in regard to the gods. He stole their secrets. The Myth of Sisyphus The Myth of Sisyphus.

      

           We have the privilege of stealing the secrets of the gods ...that the belief of the gods was that there was no more dreadful punishment than futile and hopeless labor and their belief was wrong.  There is wonderful and powerful meaning which accompanies the rolling of the rock.  The gods were wrong and it is parents who daily care with passion for their disabled children that have proved the gods wrong.  We have discovered meaning and daily battle never to lose what we have gained and learned.  Our lives are our meaning because we have chosen our work with a fierce determination.  As Mary of Magdala spoke in her gospel, "...know ye not that ye are all gods?"

I see many people die because they judge that life is not worth living. I see others paradoxically getting killed for the ideas or illusions that give them a reason for living (what is called a reason for living is also an excellent reason for dying). I therefore conclude that the meaning of life is the most urgent of questions.The Myth of SisyphusAbsurdity and Suicide

       We are the privileged...the parents of the severely disabled.  We need not search for meaning.  It has been given to us as a gift.  We simply need to accept it.  What others struggle a lifetime to decipher, we have been given in an instant.  Embrace of the gift is all that is required.

   

Whatever Became of Sin?

     In 1973, psychiatrist Karl Menninger wrote a book which he entitled, "Whatever Became of Sin?".  Earlier in 1960, Thomas Szasz (1960) wrote "The Myth of Mental Illness."  Both psychiatrists bonded in a vaguely similar belief that the pseudo-sciences of psychiatry and psychology do far too much to explain away wrong and evil and that they underplay the role of free will in human interaction and society.
      Conceptually, both would agree that psychology and psychiatry actively obscure the difference between wrong, (mis)behavior, evil and disease  in a quest to help or harm parties to conflict.  By calling people "diseased" or mentally ill or incompetent, these fields of study attempt to deny people responsibility as moral agents.  Have we continued to explain away wrong, bullying, murder, discrimination and a host of evils by maintaining a psycho-social belief that we are solely the product of nature and nurture, devoid of free will and responsibility to our every action.  Isn't it a choice to hurt someone or to be indifferent to their angst?

      Asking whatever happened to sin may appear to be a strange topic in a blog on disability and healing and empowerment.  Nonetheless, the central question directly relates to society's excuse about the lack of full embrace of the severely disabled and their protection.
       Yesterday, I read an article in the Boston newspapers about  a Bridgewater, Massachusetts middle school where three students cornered a special education student in a bathroom.  He was held down and pummeled.  This is in the context of Massachusetts recent anti-bullying laws in schools.  There are no facts in controversy as the incident was recorded on a security camera.  The consequence was a suspension for the three students.  Neither the victim's parent, the school administration nor the police would file criminal charges.  Doesn't an attack on a special needs child warrant an appearance in a court and punishment?  When is an assault not an assault?  When does no one learn a lesson and punishment become a deterrent?  Whatever happened to sin?

       This week in two blogs, readers wrote of the death of an autistic boy in a group home when he was killed by intentional asphyxiation by a worker.  Others there were beaten with sticks and the abuse went unreported.  Whatever happened to sin?
       Several months ago, I posted a blog about rampant unreported abuse in New York groups homes for the severely disabled.  Part of the blog excoriated unions for their protection of perpetrators because of union contract protections.  What ever happened to the concept of wrong and punishment?  Is it possible to rehabilitate those who abuse the most fragile in our society?  I do not believe that rehabilitation is possible nor should it even be an option.  Who will stand up for the disabled?  Unions?
      And then again in Massachusetts we have the Judge Rotenberg Center which houses many people with developmental and behavioral disabilities.  The preferred method of behavior modification:  electroshock to skin areas.  When is abuse not abuse?  Is abuse allowable when it it is a form of behavior modification?  Why have Massachusetts legislators and judges and parents allowed institutional abuse to continue?

       Stories like these are legion and a daily occurrence. Reports surface on a regular basis.  Abuse of children, the disabled, the elderly, the infirm, the aged.....no group, except the powerful or the perfect, are exempt.  We use the psychology of genetic predisposition and early learning experience to explain away evil.  We use poverty, unemployment, the ghetto, the race, etc to explain away evil acts.  Counseling is too often a response  to wrong doing and it does not work.  Imprisonment often results in high rates of recidivism.  What has become of sin?
       I am not a religious person and do not use sin in a religious sense. I do not believe in a personal god, because a god would not allow this evil to exist.  Sin is an objective act of wrong against a person or humanity.  Sin can be a free purposeful act or an act of indifference to the plight of others.  Can a person have millions of dollars, vacation monthly and have his neighbors be homeless and hungry and not sin?  Can a Massachusetts governor  give raises to his state managers when day habilitation hours for the disabled are reduced  and not sin?  Can a school superintendent provide generous raises to his central office staff and reduce services to students with disabilities and not sin?  Can a student bully another student and not sin?  Can a student bully a special needs student and not mortally sin?

       We, as a society, flee from the notion of objective wrong and work hard to explain why things are the way they are.  Should we, based upon a simple belief in our inter-connectedness simply devote life to overcoming injustice and oppression and simply doing good?  Whatever became of sin?