On July 24, 1998, our son, Adam Dzialo, drowned. Twenty-five minutes under water at a summer camp when he was 12 years old eventually resulted in a disabled body but produced an indominitable spirit and brilliant soul. Seventeen years have passed...we believe our son and his family to be in an active state of healing. We devote our lives to his maximum possible recovery and his comfort in his body.
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 spinabifida 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?"
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