Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Sunday, February 19, 2012

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!

"Tiergartenstra├če 4"


11 comments:

  1. Wow, Phil- what a post.

    " ...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."

    This quote gave me chills.

    In a perfect world, every child would be loved and wanted. My question on this whole issue, though, is if these selective abortions were done away with, what would happen to the children? I have my doubts that someone who feels adversely enough to having a disabled child that they would abort him or her given the option would dedicate the appropriate level of love and care that the child needs.

    My personal belief is that most of these abortions happen out of fear: fear they won't be able to dedicate their lives to the care of another, fear of the financial implications of a sick baby... My concern is that we would end up with either resentful, abusive parents, or more kids living life in the system. As sad as it is to say, statistics show that it is significantly more likely for both unwanted children and children with special needs to be abused. Mixing the two could turn ugly fast.

    Obviously I'm not saying that we should do away with these children preemptively because of this, I'm just wondering what the implications would be if legislation changed. Would people step up, or would the children suffer for it?

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    Replies
    1. Helena Sue,
      I appreciate the thought and the depth of your comments. Unfortunately, I have few answers. Your final questions is also a haunting one:"would people step up or would children suffer from it?" Don't know!
      I have met many parents, especially in the ABR community who have adopted very disabled and medically complex children and loved them with a deep unconditional passion..Children who are disabled only suffer from neglect by parents and caregivers, institutional abuse and indifference.
      I would hope good people would step up and care for the most vulnerable...that is the criteria by which societies are judged. Fundamentally, there remain several issues that we, as a human species, need to address. (1) An acceptance of the fact that the lives of the disabled are worthy of life and precious in their own right; and (2) that society provide all necessary supports to parents, adoptive parents and caregivers to allow them to fully care for these/our kids without total burnout. Acceptance of disability exists via the law, ADA and IDEA, the reality of acceptance and embrace is distant from the mandates of legislation. We, as a society, have not provided families the requisite supports to care for our children...not by a long shot. Those reasons make this topic so damned difficult to approach ... all I hope for is increased awareness and embrace.
      You are right about the fear: is the life worth living and are the supports there...tough issues. I hope the young in our society tackle these issues as the elders begin their fade out...Warmest regards for you and your deep reflections.

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  2. Solid post Phil, much to be taken in here though my poor brain is not up to the task just right now.
    My feeling is unfortunately that anyone standing against eugenics will be seen as a threat to the'thriving' of a 'healthy' human race. Most people will thing we are cuckoo.

    Don't forget cultural abortions like in India where girls (perfectly healthy) are simply unwanted. Welcome to the quagmire my friend, don't mind the smell.

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    Replies
    1. Thanks, Eric! I really never minded standing in the fray...been kinda of a lifestyle that my boy taught me and insisted upon. It is quite a complex and pervasive quagmire and gender based selective abortion is pretty much on the same level. Oh, and I don't mind the smell...been used to it.
      On another note, you should be soundly sleeping and chasing away that flu...enough lessons learned for the day! Warm wishes to Segev and dad...

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  3. Hey Phil,
    Read the post twice...insightful and on the mark...I am stunned to say I never even heard of PGS..though it does not surprise me.
    Designer Eugenics...how chic.
    I e-mailed you a TED talk on toxic kids...one complexity here , and I know this is not the thrust of your well reasoned argument,is the collective toxification of children in utero, and when it is exposed via gestational testing is heart wrenching for the parents. As a midwife I can personally attest to that. The collective responsibility here is enormous.
    We are dumping teratogens into fetuses (even our own eggs/sperm) and using this "designer" child mentality to select for the "perfect one"...what I am suggesting is that yes, I agree that the motivation in this PGS movement is horrendous, but wish to add an articulation of the layer of unspoken complexity.
    We "think" we select for "perfect" kids...and guess what?...ALL of the kids are marinating in ignorant-infused toxicity of our own making that may not even show up on PGS testing..and get exhibited 1 or 2 generations later.
    The motivation in all these actions it seems is greed...the I WANT -mind infecting us all...I WANT A PERFECT KID, I WANT HUGE PROFITS AND DAMN THE REST OF LIFE.
    So tally ho into the quagmire
    we are already neck deep.
    Terri

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    Replies
    1. Thanks for the additional insights and twists that you have provided. The video on toxic kids was very eye opening and it's sad that our society is heading in directions without thought or information...yes, personal and social greed underlies the demise of future generations unless a halt is in effected. I've added a link to the TED talk on toxic kids for anyone interested:

      http://www.ted.com/talks/tyrone_hayes_penelope_jagessar_chaffer_the_toxic_baby.html?source=email#.T0GpKrlA2Xh.hotmail

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    2. Appreciate you posting the link...and I urge everyone to watch it...parents or not
      we are all in it together!
      Terri

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  4. great post! many things to think

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    Replies
    1. Thanks, Alejandra. I wrote the post to hopefully provoke some discussion about an issue which is not often discussed in the disability community ... no simple answers, just deep questions.

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