Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Tuesday, October 30, 2012

Gone.....(Sandy, that is...)

       Sandy came and went from Cape Cod!  80 mph gusts of wind, one-tenth of an inch of rain, mucho coastal flooding and we did not lose electricity or INTERNET!  Someone is taking care of us!  Today, clear skies and sun!

High tide Monday at peak of "hurricane"

Monday, October 22, 2012

Making a Case For......

Motherly love, fatherly love....

America has a shameful history of cutting off people with disabilities from the rest of society by sequestering them outside their homes in "group homes" , or consigning them to isolated, often squalid institutions. 

106,000 persons with developmental disabilities lived in public and private institutions and more than 1,300,000 elders and persons with disabilities lived in nursing facilities in the year 2000. In addition, data on the outcomes of consumer-directed mental health services and intensive case management models show that most of the 58,000 persons currently confined in psychiatric institutions could be supported in their own homes in the community. The persons who fill the more than 800,000 licensed board and care beds in the United States could also live in the community (Olmstead, Reclaiming Institutionalized Lives)

Motherly love, fatherly love, family love, so-called religious people who person with disabilities should ever be institutionalized, ever.  In a society, as great as ours pretends to be, we should be able to care for those who need the most, and they don't need much other than genuine care.  There need to be no institutions for the disabled (except for the most severely medically compromised) as long as there are parents, families, religious believers, humanitarians. 

Our glass of wine, our vacation, our free time, our right to rest, our need to have our own life, our belief that we should live unfettered of human responsibility ... all denigrate the value of human life.

"Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction."  Elie Weisel, 1999

We need an ethic of care and compassion as evidenced by the reality that every disabled person is lovingly cared for in a home.  Without this ethic, our society, our religions, our faiths are a sham and a disguise for our indifference.  We must close institutions and care for our own species without excuse and without a reason that we cannot.  It is our imperative as humans!

Tuesday, October 2, 2012

YES on Question 2 (MA): Death with Dignity

     On November 6, 2012, Massachusetts residents will be faced with a Ballot Initiative (Number 2) which is referred to as "Death with Dignity."  Simply described, it would allow a licensed physician to prescribe a lethal dose of medication to a terminally ill adult patient who meets specified legal criteria.  The terminally ill patient is any adult person who has a prognosis of death within six months.  The person must be deemed mentally competent by their physician, defined as someone who can make and communicate medical decisions .  The request for the lethal prescription must be made twice orally and then witnessed and presented as a written request.  Also, there must  be 15 days between the initial oral  request and the second oral and written, witnessed requests.  The terminal diagnosis and capacity to make medical decisions must also be verified by a second physician.  Many other safe guards, including a provision for allowing for "unwilling providers", are detailed in the law. 
      Numerous bloggers and disability advocates, for whom I have the highest respect and admiration, are strongly opposed to this measure.  Steve Drake and Diane Coleman of Not Yet Dead, John Kelly (Massachusetts)  of Second Thoughts, and Bill Peace of Bad Cripple have advanced very cogent arguments in opposition to physician-assisted suicide.  The Massachusetts Medical Society is equally adamant in its opposition. 
      While the Archdiocese of Boston is opposed to this ballot initiative, I dispose of their arguments and resent their intrusion into the debate. The cardinal's reference to Mother Theresa and her care for the dying reeks of hypocrisy.   MT, with millions in the bank, ministered to the dying of Calcutta not with medication to relieve the pain but with the admonition that they should suffer and smile and enjoin the redemptive suffering of Jesus.  The Cardinal's extraordinary claims demand extraordinary proofs which are profoundly absent .
       I am the father and caregiver of a severely disabled son and I do not want to in any way infer that this ballot initiative applies to the disabled community or anyone other than a terminally ill and dying adult person.  I believe that life and the life source is sacred and that every effort be made and every service be provided to enhance, value and treasure the disabled, the elderly and the ill.  Human compassion should have no boundary.
      The above opponents of this ballot initiative articulate sound reasons for a defeat of the initiative.  They claim that physician assisted suicide devalues the disabled and that there are alternatives like hospice and palliative care.  They claim the law provides insufficient safeguards against unscrupulous relatives.  Existing reality allows for Advanced Directives, for DNR's and suicide is not illegal. Questions arise about the accuracy of terminal diagnosis.  Other questions are driven by the facts that society fails to provide necessary supports for the dying, necessary pain relief and a high quality of care which re-affirms the dignity of the person.  Issues arise which attest to the facts that the dying consider themselves or society considers them a burden, emotionally and financially. Big Pharma and health insurance companies are portrayed as agents of death.  Not insignificant among the arguments is that of the "slippery slope."  I will not attempt to refute any of these arguments. Many are possible, many may be minimally accurate, some are "straw man" arguments.  They are arguments about groups, about generic values, about assumptions of choice of death over life.  Few reservations allow for a respect on individual decision-making.
       I was initially opposed to Question 2, now I am very much in favor of the ballot initiative...I believe that death is a highly personal experience, and it can be excruciating and drawn out for the individual who is ill and for their families. Sometimes what is best and right for the individual is to claim that moment of death for themselves, knowing they are freeing themselves from...needless pain and suffering.  Words like intractable, unrelenting, intolerable, insufferable, agonizing, torturesome, unbearable describe a human being racked with unremitting anguish.  Is there a time when life is not worth living?  Is this not a subjective experience of the soul which the person should be allowed to terminate?  Who gives any person the right to say "you must live within the confines of a body when your soul has already left?"

       It is important to probe the depths of human experience .  Some people embrace infirmity, disability and pain.  They value every moment of existence.  They inspire, they overcome, they are men and women of strength and spirit, even in facing their ultimate demise.  Not everyone is so, not everyone should be expected to be so or commanded to be so.  All the supports and medications 
should not deprive a person of his or her right to say, this is enough!
     Furthermore, it is argued, we ourselves have an obligation to relieve the suffering of our fellow human beings and to respect their dignity. Lying in our hospitals today are people afflicted with excruciatingly painful and terminal conditions and diseases. They can only look forward to lives filled with yet more suffering, degradation, and deterioration in the short term. When such people beg for a merciful end to their pain, it is cruel and inhumane to refuse their pleas. Compassion demands that we comply and cooperate.

      Modern science and technology have extended life, sometimes with unendurable pain, long beyond what nature intended.  The body and the psyche is not limitless; pain and agony is not always amenable to amelioration.  Many treatments are more noxious than the disease itself.  Nature has provided a relief from terminal illness, a peaceful death. Neither nature nor human dignit  require that  persons lie  unattended and in agony  in poorly staffed and uncaring facilities drugged into semi-consciousness. This situation is unacceptable and immoral, but it is a reality.  For some, hospice and palliative care are sufficient and, for some, merely extending life is dispassionate.  The more science intrudes in the processes of nature, the more we fight to allow the inevitable to occur with peace.
      My choice to terminate my life in the face of a terminal disease without excruciating suffering is my decision.  It reflects not on my family, my supports, my level of medication, the aged population or the disabled community.  It reflects on MY desire to leave in peace when faced with the inevitable.  It is often said that the soul leaves before the body, so the shell is left to deteriorate in agony.  I would doubt that a loving, caring deity would deny me a peaceful death nor judge my decision.  How can a voter deny me the right to request medical assistance is make the passing peaceful.

       Many will ask the question, is death ever preferable to life?  A better question, perhaps, could be framed:  is life ever preferable to a bad death.  No one should ever have to die a bad death...that is the crux of Question 2,  "Death with Dignity."  And the role of physician as healer?  It does not conflict with facilitating a good death; it is very consonant with preventing a bad death experience.
       Please vote yes, in Massachusetts, on Question 2, "Death with Dignity."
       Additional resources which answer objections of opponents.

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