Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Sunday, January 2, 2011

Angels and Demons, Gods and Goddesses....A Rant and A Resolution

       It is rather inconceivable that in the course of our human evolution on planet earth,  disability has yet to be accepted for what its is...simply a human accident.  This blog is my crude attempt to frame my beliefs about the nature of disability, severe disability and handicap.  It contains my sincere beliefs about my son and about others like him.  This is not the work of a theologian,  ethicist or an historical scholar.  It is a reflection about the nature of the disabled's inability to meet the expectations of other people and society in general.  While the thinking may appear to be arrogant, it is written humbly.  I am constantly grounded by the words of House, M.D (my TV mentor and televangelist).; that if my DNA were off by a percentage point, I would be a dolphin.
       From early time and into the present day, the severely disabled are regarded as demons by some, and angels by others.  Either belief  deprives the disabled person of their genuine humanity and denies them the requisite efforts at maximizing their potential.  All handicapping conditions are the result of accident (by way of fate or karmic choice); a genetic accident, a birth accident, a bio-chemical accident or a real life accident which deprives a human of some perceived ability.  Not the way it's supposed to be, but the reality of what is. Accidents are simply accidents.  They are not punishments from gods, nor gifts from gods...gods and goddesses have no role in accidents.
        Throughout the ages, it has been  quite easy to demonize the disabled; they have no voice.  In early Grecian times, the law dictated that a newborn was not a person until after seven days of birth which legitimized  the discarding and genocide of infants.  Nazi Germany was led to believe that the disabled were a "life unworthy of life". The trends continued in modern time with the sterilization of the disabled and "feeble" so as to interrupt this troubling and increasing  genetic trend.  Institutionalization was the more recent standard bearer of the belief in demonization..keep "them" away from the general society.  The history of man has been littered with demonization of people for a disturbing variety of reasons.
       Likewise, an equally troubling trend has been the deification of the severely disabled.  This is an equally heinous trend.  The "pillow angel", the "victim soul", the living examples of the suffering christ are characterizations affixed to some.  Perhaps, it is a feeble attempt to make relevant the experience of suffering; perhaps, it is a sordid attempt to provide only custodial care and rationalize a lack of intense and life long effort at maximizing potential through whatever therapies work; or, perhaps, it is an attempt by people to justify their care-taking because they are minding the suffering of those who are more godlike that the rest of society.  The extreme of deification paves the path to  the creation of cults around the "victim souls" to pay homage to a belief that they are direct intercessors between our petty needs and the above.
       In either extreme case of the angels and demons syndrome, I am again recalling the words of House:  "Everyone lies..."  Everyone creates a story to justify the marginalization of disability.  These stories often provide excuse for the minimal efforts and services society provides.
       I suppose that there exists a middle ground: indifference.  When one espouses a belief of "no difference", you negate the reality of a person's existence.  I am unsure which of these fates is is worse: angels, demons, or nothing?
       Perhaps truth lies in the simple personhood of the disabled.  They are people who have encountered an accident, by fate or choice.  Our response has to be to provide loving care at a level which will maximize their being and their potential, by doing whatever it takes.  Often we, as individuals or a society do not do whatever it takes because our belief in either demonization or deification or sheer indifference precludes those needed efforts and even justifies this absence of effort.
       The disabled are human beings, nothing more and nothing less.  They have an absolute right to bodily integrity and a respect of their rights as humans.  They are different only in the level of care and love required by us.  Our children and adults, no matter how severely impaired, can intuit and feel the level of care, expectation and effort provided by us to them.  Without this active attempt at healing on an ongoing basis, people die.  The institutionally disabled die because there is an absence of loving care and simple touch.  The severely disabled are really no different than us.  In fact, if I look at my son and if I look at myself in a mirror, I truly wonder who is really impaired.  He always smiles and has a glow in his eyes. while I do not.
       In the intervening moments, my son just coughed a mouthful of lovingly prepared and pureed penne chicken picatta at my freshly cleaned fleece vest.  I'm rethinking my comments on demonization... My New Year Resolution...yes, to care a bit more deeply and generously.  This one I can do!


  1. You posted it, I'm glad you did! My favourite bit wad the comparison to you/Adam, his glow and smile. It's true for me, I feel that Oatie is way happier and contented than I'll ever be. Love Oatie's mum x

  2. Terrific post -- thank you --

    Many years ago we took our daughter to a very famous osteopath whose name is Dr. Viola Frymann (still working today in her nineties!) who taught me about the inherent worth and dignity of all humans. She has worked every day of her very long life to "maximize the potential" of each child that she treats. I think about her whenever I am faced with the "angel/demon" paradigm ---

  3. Well done. While I am aware of Claire's need to distinguish the "medical model" and the "social model", being in a medical profession myself, after twenty years, I still maintain that, " The institutionally disabled die because there is an absence of loving care and simple touch" is only part of the reason. And only part of the problem. Education is needed since not all caregivers, taking for granted that they do what they do with conviction, are equally capable of paying attention to details. Extreme multi complex children are also dying at home; often, just like with average children, accidents can happen. But education and learning to pay better attention is also a factor in death.

    Life and death aside, I don't think the middle ground between demonization and deification is indifference, rather acceptance. These polarizing times are seeing an end to "political correctness", people are getting more entrenched in their ideas, more stubborn and closed off from the "invasion" of information, threatening to confuse, or introduce cracks into cohesive social formats.

    As usual I expect the belligerent few, with the loudest voices and the simplest minds to prevail and we will hunker back to the time when we thought bio-ethics was more than just a few masturbating to nature.

  4. Hey Phil,
    What a thought storm You brought me back to my problem with even the word, disabled. What the heck is abled? And why would a deep being as Adam be the one who is dis-abled. While I was working with "Disability Services" I saw this over and over again and had to rein in my anger at the arrogance of the so called abled- folks who could not dare to imagine themselves in the place of the "other" and with deep fear they withdrew,misused, disbused and made life horrible for those humans who was even less than 1 degree different that the accept pattern of human that society has imposed. And there is so much that is lost in this way.
    I believe thee is an element of choice in the becoming "disabled" and that's another conversation altogether.
    I have not found a word and I am still not sure who is dis-abled in the human equation. I know Adam cannot move or speak, I know I cannot see what he sees, hear what he hears, experience the world as he does, or be as absolutely joyful as he is. I feel disabled everytime I think of him.
    I am the one with the loss, and that is neither angel nor demon it is simply perspective, and one I am not afraid to take. It keeps me human


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