Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Tuesday, February 28, 2012

Quality of Life...A Concept Which Has Outlived Its Usefulness

       I have a dream...that the phrase "quality of life" will be forever banned from our language.  These words, which I encounter on a daily basis,  provide no meaning, no clarity, no objectivity and do confuse to no end.  These words contribute to a judgmentalism which often results in a rejection of life, of living and an understanding of suffering.
       Is "quality of life" a criteria by which we justify the movement in some areas of our country toward "assisted suicide?"  Is "quality of life" the criteria which we assume to be a basis for accepting a variety of eugenic beliefs?  Is "quality of life" the criteria which we use to place Do Not Resuscitate Orders on the infirm and the disabled?  Is our definition of "quality of life" the reason that the infirm and the disabled are institutionalized and removed from their only safe and loved ones.  Is "quality of life" a reason that we fail to take extraordinary measures to  preserve life?  Is "quality of life" a reason used to justify growth attenuation and whose quality of life are we referring to?  The child's or the adult's?  At which point is intractable suffering sufficient to justify termination of living?  And, at which point is "quality of life" a merely subjective phrase to justify unjustifiable actions?
       Of course, health providers have attempted to quantify "quality of life"?  Economists, sociologists, medical groups, psychologists have all attempted to quantify and objectify "quality of life" indicators.  Are the variables money, friends, spouses, location, the environment, sufficient health?  Are the contra-indicating variables pain, persistent vegetative states, immobility, lack of communication abilities, coma?  What about the simplistic definitions emanating from the "quality of life project?"
        I believe that we often attempt to define quality of life in order to establish a criteria to end life.  Assisted suicide initiatives, legal only in Oregon, Washington and Montana and much to my great dismay on the ballot in my Massachusetts in 2012 (the U.S.), rely on self-definitions and self-perceptions of quality of life and a determination whether life is worth living.  Extensive studies in Oregon which concerned assisted suicide indicate that motivations and people's reasoning is quite clear.    The main reason for choosing to die was the "loss of autonomy", followed by "loss of dignity" and followed by "loss of bodily function."  Should we be honest and say that all three relate to incontinence and have little to do with intractable pain.  The latter was far down the list.   Is this perceived indignity a criteria for "quality of life?"

       "Quality of life" perhaps has more to do with the outside observer than with the spirit of those being observed.  Living is  supported by family, by friends and by society, it is an acceptance of the simplicity and innate dignity of life.  It is a communication from society that incontinence, immobility, pvs, and all others conditions (medical, social, economic, etc)  are peripheral to the nature of life worth living.  Perhaps life itself is the only indicator of the "quality of life."  After all, what is essential is invisible to the eye.  Unfortunately, it is the observer which determines that life is not worth living, or perhaps, the society's communication of what constitutes dignity.  Societal determinations pollute a desire to accept life as it is.

       Human beings are undefinable, incapable of being reduced to an illness, a diagnosis, a condition or a life state.  Human beings are life and life is something cherished, nurtured and preserved.  It is only the perceptions of others and the clouded vision of society which reduces the lives of men and women, children, the aged, the widowed, the infirm to a set of criteria which purportedly define "quality of life."  Allow life to begin, to cease, to be altered only in the "aloneness" of the person.  There should be no definitions, no indicators, no reasons...just my opinion, just to allow another perspective to rise to the surface.  Perhaps, I am wrong....

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"

Sunday, February 12, 2012


   ...taking a short break from blogging...days not weeks!  It's winter on the Cape and it's cold, low temps in the mid 30's F.  Cold means hibernation!  Well, the reality is that I've got to get our taxes done NOW!  Got to produce and mail our W-4's and 1099-MISC's, since we employ Adam's aides and others.  Federal taxes, we owe; state taxes, we get back; Trust taxes and reports are a complicated pain in the arse. Of course, the forms were due by February 1...hence, I'm a tad bit late.
    Evaluations for determining Medicaid hours for PCA's; DDS (Department of Developmental Services) appointments for state grants; Health Insurance renewals; Adam's SSI (Supplemental Security Income) re-evauations, on and on.  BooHoo!  Plus mom and dad have decided to go vegan after watching a scary documentary called "Forks Over Knives"!  So dad has to create a whole new menu and food shopping routine since he's the cook here.  We're trying to extend our life expectancy to match Adam's. So the blogger will return shortly!
    So, I hope you buy my excuse...

My wife told me that "arguement" is spelled wrong in the poster.
actually it's the British variation of argument!  Ha! Ha!

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