Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Friday, April 13, 2012

"Taking Mercy"....When Right is Wrong and Wrong is Right?

       I have carefully read many blogs lately which have unequivocally condemned parents who have killed their disabled children.  I have carefully read and reflected upon many blogs which have condemned the media for its emphasis on the lack of attention given to the children victims and the emphasis placed upon the "burden of disability" on the parent.  I have read many blogs written by people who have media reports as their only frame of reference, and many by people who have not experienced caring for non ambulatory, non verbal, medically compromised children.  I have read many blogs written by people who are long on condemnation and short on empathy and  very short on compassion.
        I believe that many issues in morality and ethics are black and white.  Rape is wrong, always.  Theft, when one is not on the brink of survival, is always wrong.  Murder, as revenge, as part of the commission of another crime, as rage, as jealousy, as punishment,  is always wrong.  There are many areas of human morality which are clouded by a karma which possibly can be mitigated.  Even grave karma, can possibly be mitigated.
        Today, I viewed a video about the beliefs of Robert Latimer and Annette Corriveau respecting the euthanasia or killing of their disabled children.  As the parent of a severely disabled child whom I have loving cared for since 1998, I wanted to condemn their actions and their beliefs.  I could not, but I could cry....many tears.


       Robert Latimer killed his daughter who had cerebral palsy, endured numerous operations and who could not tolerate pain relief medication because of contraindications with seizure medications.  Annette Corriveau wants to kill her two adult children who have San Filippo Syndrome.. I wanted  to condemn these parents because others would have me believe that their murder would devalue all disabled people, that their murder would reinforce the belief that some "life is not worthy of life."  I could not think in terms of right and wrong and black and white.  Annette Corriveau refused to discontinue life support (withdrawal of the feeding tubes)  because dying of an absence of hydration and nutrition was cruel and horrifically painful, she wanted them put to sleep.  I wanted to pull out my indignation and  religious morality (which I don't really have), my secular humanism (which I pride myself on) or my disability advocate "hat", but I could not.  I could only shed tears...
       Would their actions be misguided mercy killing, legalized assisted suicide (which I constantly rail against), euthanasia, genocide or plain murder?  Would the desire to end horrific and unmitigated suffering be an act of ultimate parental love?  I only have the raw emotion of tears and an absence of judgement!  I would pray never to face such a circumstance and then, whom am I to speak about the decisions of others?
       What I did see in watching the experience of these parents was a profound lack of affect.  I am sure that they have lived a thousand lives, have experienced a thousand thoughts and moments of introspection.  I am sure that their actions are thoroughly premeditated and consonant with their hearts and souls.  I believe that the absence of anguish and loss of affect indicates that they have metaphorically died long before their children.  After all, the spirit leaves long before the body ceases function.
       I am left wondering.  My wife and I have been able to leave a written "advanced directives" that no extra-ordinary  measures be taken to prolong our lives when our bodies are incapable of sustaining life.  The suddenly disabled, the progressively disabled, the born disabled have never had the option of  "advanced directives."  Who is it left to make the decision?
       I know very little.  I know that I cannot be outraged nor condemn these parents.  I know that I cannot judge.  I know that I am not a god.  I know that life is transitory and I know that most parents strive to love their children the best they can.  I know that human resilience is not infinite; it has its limitations.  I know that most people have a deep and abiding conscience.  I know that  the "book" speaks of not judging others, lest one be judged.  I know that my only reality is tears.....and you?
        

32 comments:

  1. I believe I've said it before, but not so well as you did here.

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    1. Yes, you did , Elizabeth and also eloquently. I was just stunned by this Canadian video...over and over again!

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  2. I cried a lot with this publication, it is incredible that this happens, I am very sad. :(

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    1. Thank you for sharing your thoughts, Atenas; tears have a way of cleansing our souls of the horrific grief they encounter.

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  3. You have spoken your thoughts so beautifully, so rightfully - I so admire your opinion.
    I couldn't watch the video - I didn't want to experience that pain. It's almost like I hide away from not wanting to know the awful things that happen in our world around us everyday. I think I cope with my own situation better if I forget about how some others don't cope. That seems like a cop out - but that's where the fine line for me teeters. I could push myself to immerse my senses into everyone else's grief but I would take it way too much on board. I need to see the stories of courage and resilience to keep me going or I know I could fall into a pit too deep to get out.

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    1. Marcelle, there is no cop out here. I suppose that my need to watch this over and over again stems from a deep pain when I see suffering of the innocent. Suffering which can be alleviated by a great resilience on the part of part of parents and care-givers. I also see when that resilience melts away in face of that which we fear for our kids. No answers, just a thousand questions and ....staying the track. Thank you for sharing your thoughts and feelings. Parenting, like yours, is uncommon in our world.

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  4. I did not watch; plenty of tears already, lately. So I'm just assuming that the last thing in the world this is about is the devaluing of these children by their parents, and that it is, rather, about love.

    I admire courage and grit--hell, as an aging single parent I wonder how I would get through the day if I were totally lacking in those qualities even though dread has become a close companion--- but am no longer hopeful or naive about imagining they can necessarily create a viable, novel option, a good enough new option. Guess I've lost the precious arrogance of youth.

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    1. A...thank you for your words. I do not pretend to know or judge the motivation of parents, but I am saddened by the the struggles of those who toil in the world of disability each and every day of their lives. I do hope there is a reward and a peace at the end of this process...an abiding peace.

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  5. That's a really tricky subject, Phil.. one that you have addressed very eloquently. It's a hard reality for anyone to have to look in the face... the kind of thing no one likes to think about. Speaking honestly, I personally would not want to live a life of nothing but misery and pain and sickness... but that's me. To append that decision to any other individual, I feel, is wrong. But then, if that individual can't express himself or herself, then what do you go by? Is it better to err on the side of preserving life at the cost of extreme suffering, or to err on the side of purposefully taking the life of someone who isn't ready to go home to God? I don't know. It's a horrible gray area - a decision I wish no one ever had to consider.

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    1. Helena, tricky is an understatement. I do not pretend to pose any answers, I do not pretend to know what I would do given these circumstances. Above all, I do not know how to weigh the sides of the dilemma which you proposed. I suppose that we can talk about those things and those options....my heart breaks for those who face these decisions. Thank you!

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  6. Phil,
    You may have noticed my voice was missing on this issue on FB. It is because I agree with what you said on FB and here. I am sure I do not know the mental or emotional state of the parents. I also firmly believe, "Let he who is without sin cast the first stone."

    I cannot fathom being in the position of these parents. I do believe the media should not ignore the victim, but condemning parents without the full story is equally wrong in my humble option. Only they know what was in their hearts, and in cases where they took their own lives too, how can we begin to guess whether they were suffering from their own demons or really trying to help their child.

    I did not appreciate seeing my daughter called into this one publically either. I purposefully stepped away from the horrific bullying stories. They were never supported by those who want me to support this cause, so I am unclear as to why someone would try to pull me or my daughter into this one.

    Mahalo for writing this post! You and Sharon and Adam always have my vote of support!

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  7. Thank you for your voice and wisdom on this issue. And, yes, I have noticed a horrendous increase in the "throwing of stones" as of late. Of course, those doing the throwing have never had to face the realities of the "accused." I have been grateful that there are so many humans who have open hearts.
    And you are right when you speak of the reality that we do not know the hearts of the individuals and their children...that knowing is and should be left to a higher power. That certitude of knowing, the vision of a black and white world, that messianic belief in self-righteousness .... all form the foundation for "bullying"... a social and spiritual issue which you have so eloquently written about on so many occasions.
    I had not known that you and your daughter were drawn publically into these rants. I am truly sorry that such a situation occurred. I withdrew intentionally from a number of these FB threads because there was only one world view allowed...Warmth and blessing to you and your family.

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    1. Mahalo my friend! Blessing to you and yours too!

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  8. Thank you for referring me to your blog, Phil. You challenge me to be a better person.

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  9. I am happy that you could join in this dialogue...there are so few clear answers, and many, many questions...BTW, Dr Phil gave such a very intimate issue such a cursory analysis, but that's TV. I hope that a universal dialogue ensures which allows for a greater depth of human understanding and compassion. Blessings and warmth to you!

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  10. Dear Philip,
    Thank you for responding to God's call so faithfully,by sacrificing so much for your boy.
    I think,parents given disabled children become like other Simons (of Cyrene).Simons who despite not wanting to,are still chosen, to help Jesus carry the cross to Calvary. That experience of being with Jesus under the heaviest of all crosses( metaphorically,the heaviest.. as it was the atonement for the sins of the whole world,past, present and future) would have transformed Simon of Cyrene into a man empathetic,compassionate and foremost: un-condemning (of crucified criminals- whom he always had thought were suffering their just due...but here was a contradiction,Jesus!)...Anyways,the point is,he was transformed for ever.So also,these modern day Jesuses...our suffering,dependent children,transform us into better versions of ourselves.No?
    "Why should innocent children, who have no need of purification-through-suffering, suffer?"... The question my mother and father,(who like you have lovingly taken care of my sister- non verbal,non ambulatory child with severe Mental Retardation- since 1996,)often ask me.. I never had an answer,but now I think I am beginning to understand.
    Children like your son and my sister, are souls selected before their birth to suffer like Jesus,(who Himself, didn't need purification through suffering for He was sinless).Just as all who opened their hearts to Jesus were transformed -into human beings who were fully human, fully alive and (after the Pentecost experience) unafraid even to die for the Truth-so also,we are transformed when we care for our sick, lovingly.
    To encounter Jesus today there is no 'more real way' than through the bodies of our disabled relatives. Amy (a care-giver to a sick child herself)who blogs @ Diapeepees,has explained the purpose of seemingly meaningless suffering of disabled and sick who are totally or partially dependent, http://diapeepees.blogspot.in/2012/03/answer-to-deep-question.html
    She says," A lot of people just feel bad for kids like her. Many don't even think they should be born; a staggering number of mothers choose to abort. Yet I thought, it is through her that God just said He would show himself. Her existence is vital. And it's obvious, isn't it? We know how the best of ourselves comes out when we help someone else. This dependent child will bring good things -- holy things -- out of people. Changing their perspectives. Softening them. She will be in need all her life; she will be a continuous showcase of the works of God."

    God the Father watched the most excruciating suffering of Jesus,yet the most compassionate and merciful God didn't choose to stop the pain by any intervention.He allowed His Son to bear it all, down to the very last ,most painful gasp,squeezed out from the heaving shreds of his compressed lungs!
    Chelsea Zimmerman,herself a sweet-smelling offering to God,writes,"Though he does not will suffering, which is a consequence of Original Sin, God does, much to our bewilderment, allow it and he invites us to consent to it, not in a sense of passive resignation, but in the trusting, total abandonment that "for those who love God, everything works together for good" (Rom. 8:28).
    http://www.patheos.com/Resources/Additional-Resources/Refusing-to-Suffer-Is-Refusing-to-Live-Zimmerman-02-09-2011

    With love and prayers,
    your sister in Christ,
    Anna

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  11. Anna,
    Thank you for your very kind and gracious words. I am not a martyr nor any sort of a special person. You present me a thoroughly Christian message and I acknowledge your understanding of your faith and the application of that belief to daily life.
    With all due respect, I am not a Christian nor do I believe in a personal god other other-worldly power. I do not believe in the Christian concept of a "victim soul" nor the belief that suffering is allowed. My son's profound disability was an accident at a summer camp, nothing ordained. He does not suffer for others' sins nor should his suffering be lauded...it simply is.
    I deeply love and care for my son, and always will...not out of any religious belief but because he is my son. I do not attribute his disability or suffering to any special status other than cosmic misfortune. If a loving god and an all-powerful god existed, he would have been creative enough to prevent this accident and would heal my son. Gods do not allow human suffering nor should they condone it, if they can do something about it. For me, the notion of a god is unnecessary to explain ethics, compassion nor love.
    I do appreciate and understand your belief, it is simply that I cannot and will not share those beliefs. I do share the fundamental belief of love of people with you. Thank you for your words.

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  12. Corriveau is one thing...Latimer another. Latimer was a guy who got overwhelmed by the medical system that performed what were likely a number of invasive and unnecessary procedures...on a child who could not tolerate pain meds. My kid cannot tolerate pain meds. She could have had a half-dozen surgeries by now if I did not do my research and weigh in the "cost-benefit" ratio aspects of it. This is why parents of kids with severe disabilities need similar to support them when it comes to dealing with the medical establishment. In the end, my kid did not need me to kill her off to keep her from being in pain, caused by a bunch of doctors always trying to "fix" her.

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  13. Thanks, Claire....Adam also. We have made a conscious decision to avoid those tendon releases, baclophen pumps, steel rods in the spinal column, and on and on. I am sure that we are on the same page in dealing with our kids...it is the medical establishment that could put unbearable stress on their bodies...that's why we are into our therapies, not for the fix (not sure there is such a thing), but to make always allow him to be
    more comfortable in his body.
    Most doctors, ortho's especially, know only cut and sew and many parents have only them to trust in...maybe fear, maybe time, maybe resilience keeps them from looking into other worlds? Who knows?

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  14. Dunno Phil - really struggling with this one. You said in your post "I would pray never to face such a circumstance" - what is that circumstance? Having a severely disabled child...? Do you not already? I certainly did (have a severely disabled child), and still never found myself in Corriveau's shoes of wanting to end my child's life. The 'circumstance' is her inability to abide their perceived suffering--which, even though this is beside the point, I saw no evidence of. In fact, I suggest that killing her children will end HER suffering. I humbly offer to this dialogue that there is indeed a right and wrong here. I can empathize with a parent's fears and suffering but not when they're projected onto his or her children, especially if it results in justifying killing them. (I have to 'fess up that I didn't stick around the video long enough to watch Robert Latimer...)

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  15. Jennifer...thank you for your comment. I honor your experiences and your insight. Your question is provoking....yes, I have a very severely disabled 26 year old and I do not ever believe that I will face the same questions are Corriveau or Latimer. My dark place would take me to a cave where my son could not sustain life without extremely extra-ordinary measures without a hope of recovery ... would I have machines breathe for him, feed him, hydrate him, keep his heart beating when I knew systems were progressively shutting down? I believe there are situations where the spirit has left but technology maintains body function. Is there a point of letting go? Also, dunno, for me.
    I don't necessary agree with nor support either parent. I simply wanted people not to judge and to realize that parents are not infinitely resilient. Since I have written about dark place in previous posts, this was also my journey to a dark place.
    I appreciate your ability to have me think and feel, once again! Thanks!

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  16. Great dialogue Phil! Instead of trolling here I'll write a post of my own :) Although a couple of things I can't leave unsaid:

    Not judging people is one thing, but absolutely we should debate and judge each others' actions. These issues are not private family matters and in my mind, are not grey areas nor are they complex. These issues are about a society's obligation to protect its vulnerable populations. It is not for a parent (or anyone) to decide whether or not a person lives or dies based on their disability, particularly when they are not capable of making this request or decision for themselves. Millions of people endure "horrific and unmitigated suffering" on a daily basis probably FAR worse than the disabilities 'suffered' by Corriveau's children (war, torture, poverty, enslavement, extreme pain) and don't choose to kill themselves - so is it an ultimate act of love to kill them all too?

    And another thing! :) Where are the disability advocates in these media portrayals?

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  17. Jennifer...I will look forward to your thoughtful reflections on this issue, as I believe that you possess a great deal of insight. I do agree that there are many more severely involved people than the adult Corriveau children ... I always believe that where there is sustainable life all measures should be taken to preserve that life. Please don't assume anything about my words other than that they reflect my personal dark places in my life and my reflections upon upon those places.
    The disability advocates were probably intentionally left out of the shows, especially the superficial, always one sided Dr Phil an Dr Oz shows. The one person on Dr Phil allowed to speak against the Corriveau decision was ill-portrayed and a speck in the audience. The other speaker was "Dr. Death's" attorney...so much for TV crap.

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  18. Oh gosh - no assumptions at all! Appreciate the opportunity for discussion and admire your even-handed presentation of this. All credit to you for braving the mucky waters. It takes a lot to draw me out - good for me to get riled every now and then :) Will post another comment when I've drafted my post. Many thanks, Jennifer

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  19. Hi again - just want to share my own post:

    http://johannesen.ca/yesorno/2012/04/the-world-is-going-mad-my-commentary-on-so-called-mercy-killings/

    Thanks Phil!

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  20. Jennifer , Thank you for sharing this very compelling insight into "mercy killing." I would ask that all readers here please visit your site (link above) for your analysis and thoughts on a gut-wrenching issue which faces too many people....

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  21. This was a very deep and thoughtful post and I appreciate the openness that you have shared with us. I could not watch the video. It would have ripped me apart.

    Many years ago, my beautiful 17-year-old son was killed. He lived for about 20 minutes after his injury and would have been profoundly brain injured had he survived. Burying your child is horrifying. But I sometimes I comfort myself with the thought that at least he passed quietly and is not facing a lifetime of pain and suffering. I don't know what I would do in a situation like that.

    I know that for myself, I would want to be put out of my misery. My husband and I both have directives similar to the ones you described. There is nothing merciful about prolonging a life that is no longer a "life," merely an existence. Gut-wrenching doesn't begin to cover it.

    Kay in Hawaii

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  22. Kay...
    Thank you for sharing you life-story. Our children are supposed to survive us, or so we believe. When this does not happen, there is a deep wound which never really heals. Yes, I can only imagine that burying a child is the ultimate in horrifying experiences.
    I, also, believe that resilience is not unlimited and that a person does not have an infinite capacity to suffer. I so deeply believe the words that you have shared and I am awed by the depth of your conviction and compassion.
    Your words have a power which need to be shared and appreciated. Thank you! Warmest regards!

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  23. Me again :) I realize I'm conflating comments across blogs - hope you're okay with seemingly random thoughts...

    I don't see the point in extreme suffering for its own sake either Phil... and I don't think our capacity for suffering is limitless. I think I used the word 'immense' :). I just question that anyone can judge what extreme suffering really is. In that video with those two adult children, I did not see suffering (although I certainly saw the mother suffering!)

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  24. Jennifer...it's ok; randomness is the essence of my life. I also did not see extreme physical suffering, I could not judge extreme emotional suffering or spiritual suffering. All I saw was cherry-picked media clips which made me cry ,,, big tears. I was taken to dark places that I have a propensity to venture to. I did attempt to look into the heart and I did not see a murderer nor Dr, Death (or his lawyer). I actually did see his lame lawyer on Dr. Phil (big mistake), I was able to distinguish soul-weary people, weary at the core who needed something....I really appreciate involvement in a dialogue with you. Despite differences, we can meet in space, share and respect...that is good!!

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  25. Thank you for visiting my blog. My son Brenton age 18 (19 in August) is a disability support professional. How his career choice came about has a lovely story behind it and there are posts regarding this on my blog. I am your latest blog follower.


    Kind regards


    Kimmie
    x

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  26. I wrote again about this today, and found myself coming back to the piece that brought me here...again, you remind me that these things aren't so black and white.

    Thank you for sticking with me when I'm tempted to believe that the world actually is that way.

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