July 24, 1998..."If There is a God, He Will Have To Beg You to Forgive Him"*

My dearest son,

       On July 24, 1998 at 1:25 pm, exactly 15 years ago. you drowned.  I have never had the courage to use the word "drown" because of the terror that emanates from the image.  I have always said near-drowning, but the reality is that you did drown, submerged 25 minutes under the waters of a raging river, a foot entrapped in rocks.  Heroic efforts were made to bring you to the surface.  No pulse, no heartbeat, no respiration, just a blue pallor and a peaceful face.  God was asleep, he was absent, he was indifferent, perhaps he never existed.  Yet, you survived; not by any intervention of  divine nature but rather through the remnants of our evolutionary heritage's response to the possibility of drowning , the mammalian diving reflex.  You survived months in Intensive Care - left without speech, the ability to communicate, the ability to move, and a body which gradually froze in spasticity and contracture. You hovered between death and life and eventually chose life.  Everyone pretended to care, at least for awhile.  You were momentarily surrounded by friends, relatives, flowers, balloons and trinkets...for a awhile.  But that was 15 years ago.....
      To this day, I am plagued by images of you being entrapped and enveloped in water.  I am plagued by the terror which filled every cell of your being.  I am plagued by the fear of your impending death.  I am plagued by the image of planning a funeral as I traveled to the trauma center.  I was plagued by the possibility  that you might not make it, that you would be alone...your greatest fear as a child.  I am plagued that you always spoke to me about the need to be cared for, long before the accident.  I am plagued by the unspoken, unacknowledged burden and grief that these events have imposed upon my daughter, Aimee.   I am plagued...wounded, and the wounds can never, ever heal.  Maybe, they should not heal! One never gets over this terror.  For 15 years, I have never eliminated the fear that something can go wrong.  I think and feel the worst; smiling is a rarity for me, even though you, my son, always smile.  The sorrow is chronic and the fear unending.  I never, as a father, yield - always searching for the magic bullet which makes life easier for you.
       But you, son, are alone,   Alone in your fear, your thoughts, your dreams.  You are alone, even as mom and dad passionately and unconditionally care for you every minute of every day for 15 years.  Alone...but, does it have to be so?  Where are those friends, your cousins, your aunts and uncles, your teachers and therapists...all those who should care and reinforce the fact that you are not alone, that you are alive, that your life is worthy?  Why have they run?  Fear, lack of comfort, time and distance, not knowing the words to say. fear of the look in your eyes, my son,  guilt over the lies they told (remember, some said they would be there for however long it takes).  Do they see their souls in your loving and yearning eyes? What stories have they fabricated to justify leaving you alone?  Or is it the evil of human indifference, the "not caring" which renders you only an abstraction.
     July 24 will come and go.  We will celebrate your life and struggle with you.  Will there be a phone call to see if you are still alive?  Will there be cards, flowers, balloons, small tokens of love?  I know one hero who will call, who always calls on that day to say you are never forgotten.  One man, one constant voice in a wilderness and sea of indifference.  There are also a few others of importance and significance who will remember. Yet, your struggle is more meaningful than that of others to whom much is given...but should much not be expected from ?
        I have many questions to ask you?  How intense was the struggle to live..how much fear did you experience? Did you see the other side when you drowned?  Did someone tell you it was not your time? Did someone tell your spirit to return to your body?  How much did you fight?  How much do you remember?  What went through your mind?  Did you see the white light?  Was this side better than that side?  Did you know you would be cared for on this side?  Did you know the intensity your fight would demand of you?  Did you know and believe that  your parents would become warriors for you?  Did you know that your friends and relatives would soon leave?  Did you know that people would be fearful to visit you and to care for you...did you know in that 25 minutes what life would be like and why did you choose this life?  What do you feel about people who have abandoned you, who opposed you in your fight for justice?  Did you forgive them or is that forgiveness for them to find for themselves?  Is there any emotion which evaded your consciousness?  What prompts you to continue the fight on a daily basis?  Someday we will have this conversation...someday I will know and someday I will no longer have to wonder.  And yes, if there is a God, He will need to beg forgiveness from both of us...he was asleep, he was indifferent, he was absent...

       And so we continue, for many years ...as long as life sustains us.  We will continue with care and love to sustain your life.  We will continue with all the therapies and infusions of energy because they support life.  We will appreciate the efforts and energies of those who sustain the flow of that energy.  We will always continue for no reason other than these efforts are WORTHY.  There is no higher tribute to life than to live a worthy life.  To do this because you are my son, because there might be a god and a heaven, because we are linked, debases the reality that we do what we so simply because it is good, it is worthy and that is that sole nature of existence...to do good and live a worthy life.

dad

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

*“If there is a God, He will have to beg my forgiveness.” — A phrase that was carved on the walls of a concentration camp cell during WWII by a Jewish prisoner (Mauthausen camp).

The Slippery Slope Argument ....or the Camel's Nose: MA Question 2

       People die.  Our parents die, our siblings die, our children die, we all die....  It may be the final end, it maybe a transition, it maybe the prelude to the next life, it may be heaven or hell ... no proofs, just a wide disparity of beliefs.  I wrote extensively about Question 2 earlier in the month.

      Massachusetts voters are considering a ballot initiative in less than a week:  Death with Dignity, Physician-Assisted Suicide. Lately opponents are placing political ads on the tube which parallel the lies and distortions of the presidential campaigns.  Vote no: because no family would be around, because no physician would be there, because no psychological evaluation is mandated. Vote no:  because you break apart 100 seconal capsules, dissolve in water and drink.  Vote no: because of the slippery slope:  the terminally ill, then soon the disabled, then soon anyone a burden to society, then....we are the Netherlands.  This I believe stems from a rampant sense of unreal projection.       

One pernicious category of imaginary risks involves those created by users of the dreaded “slippery slope” arguments. Such arguments are dangerous because they are popular, versatile and often convincing, yet completely fallacious. Worse, they are creeping into an arena that should be above this sort of thing: physician-assisted suicide for the terminally ill.

"The Slippery Slope is a fallacy in which a person asserts that some event must inevitably follow from another without any argument for the inevitability of the event in question. In most cases, there are a series of steps or gradations between one event and the one in question and no reason is given as to why the intervening steps or gradations will simply be bypassed. This "argument" has the following form:

Event X has occurred (or will or might occur).
Therefore event Y will inevitably happen.

This sort of "reasoning" is fallacious because there is no reason to believe that one event must inevitably follow from another without an argument for such a claim. This is especially clear in cases in which there is a significant number of steps or gradations between one event and another." The Nizkor Project

There is no evidence for the "slippery slope" or "camel's nose" argument in any place in the United States which has approved the "Death with Dignity" initiative.  Disability advocacy groups oppose Question 2, often on the basis of "the slippery slope" argument.  The disabled are not terminally ill; to equate disability with terminal illness is an insult.  Terminally ill people are often disabled to some degree.  There is no necessary or appropriate equation between the two states of living.


The lack of safeguards is an argument more reminiscent of a "salami slicing" strategy.  True, there does not need to be family nor a physician present and 100 capsules of seconal are dissolved in water and drank.  Some dying people would want family there to say a final good-bye; others might not....so what?  It's part of choice.  Play into people's fears to defeat an initiative?

How can this deception occur? Look to the money funnel: "In order to launch their "no" campaign, they (opponents) accepted critical seed money from two anti-gay groups: the American Family Association and the American Principles Project. The American Family Association was named a hate group by the Southern Poverty Law Center for their extremist actions, "including publicizing companies that have pro-gay policies and organizing boycotts against them."

Two requests for a lethal prescription, another witnessed request in writing, a determination by the physician that the patient is mentally competent to make medical decisions and a review by a second physician. A psychiatric evaluation may be required if needed. And a confirmed diagnosis of terminal within 6 months.  Quite a series of safeguards!

Yes, doctors make frequent mistakes.  Terminal in six months could translate to terminal in 6 years.  The lethal prescription is an option when life is intolerable or pain unrelenting and intractable.  I would doubt that many would choose to use the script if they are moderately ill or in manageable pain. People given the prescription do not always use it.  People know when death is near.  People know
when they can no longer tolerate life. This experience is quite subjective.  Hospice and palliative care are not ALWAYS an answer nor a solution, but a compliment to physician-assisted suicide.

"However, when looking at the statistics from Washington and Oregon, it appears that terminally ill patients are not choosing the DWDA program as an alternative to hospice care but as a compliment. The majority of patients who ingest DWDA medications are also enrolled in hospice care; 83% in Washington and 97% in Oregon." Barton Associates, Locum Tenens Experts, 10/29/2012


If you are opposed on moral or ethical grounds, do not prevent people of differing ethics or morality from the exercise of choice. If you advocate for the "slippery slope" position, realize that this is a philosophical and epistemological fallacy...."extraordinary claims require extraordinary proofs" (Hitchens, C)

A good life should lead to a "good death."  No person should be forced to endure a "bad death"; no person should be deprived of choice because of the fears of some.  Yes, I acknowledge that good people will disagree, but do not allow disagreement to preclude choice of a "good death."

Comments are disabled; tomorrow is Aimee's wedding then will post pictures.
       

My Descent Into Madness.....

     This life of care-giving, year upon year, takes the mind where minds don't usually go!  That's not an original phrase but robbed from the rock opera "Tommy'" by The Who.  Most readers are too young to have a clue about this rendition.  Anyway, psychic triggers abound after the years and issues which most people in the "real" world would ignore ignite atomic explosions in my soul.  Last week, the trigger was organized religion....'nough said!
      Today, alas, today, it was the use (abuse) and handicapped kids in fashion advertising to promote the delusion of inclusion.  It reminds me of the day when blacks were included in advertising as long as they were light skinned blacks.  Blacks who were really dark-skinned reminded the masses of the agony of the years of ignominious slavery...can't do that, can we?  So we carefully picked just the right shade of black and the right features so these folks who appeared with whites in fashion mags looked like darker skinned whites.  Triggered the ever loving crap out of me.

Delores Cortes, Spanish Designer

      So, now we enter the world of disability inclusion; just so that we are all marginally PC and we can get the disabled community off our backs.  I mean, really now, with ADA, IDEA and the like dribbles of legislation, what more do these folks want.
       I am watching fashionistas use handicapped disabled kids to promote their new lines of wear.  First, light skinned blacks, then plus size women, now disabled kids.  Is there no extreme that we will go to in order to make a buck?  Here's the rub which triggers ever frayed nerve in my jangled tangle of neurons which even a valium won't abate.

Our friends at Target

       First take the right kid...someone with Down Syndrome who is cuter, more adorable, more hugable than the highest angel in the heavens.  Then take said child and use them to promote swimwear, to promote inclusive clothing in a chain store striving to break the corporate delusions of a Chick-fil-A or a Wendy's or a Limbaugh sponsor.  The message is that we are so fuckin' good because we include the adorable disabled child.
       Now this child has none of the pronounced features of a moderately severely DS child and could easily be mistaken for Sally down the street.  The issue is not because of a commitment to disability awareness or the promotion of inclusion in society.  The message is not that the lives of the severely disabled are worthy of life in the fullest.  The message is we "luv" cute disabled kids and we want to to know this so you buy our product.  The same is true of the purveyors of adaptive and assistive equipment...cute, well-groomed, almost normal looking kids. I know, and if you follow me in this blog, that all disabled kids, even the most severe are beautiful...I somehow think that society does not subscribe to our definition of beauty.

And our friends at Nordstrom's

       Did you ever see an advertisement for a product which features a kid with a trach, with a g-tube, having a massive seizure?  How about spastic kid with contorted hands and feet?  How about a kid modeling an aeropostale shirt with severe scoliosis?  Better yet, how about a kid in a wheelchair with a urine collection bag attached to the side?  Now that's a pair of jeans that would sell and make the manufacturer a billion..

One cool dude...what's he selling?

       Why do I feel that a rampant hypocrisy underlies the depiction and the inclusion of adorable disabled kids in advertising?  Why do I feel that the really really severely disabled are unworthy of fashion modeling?  Why is that I feel severely disabled can't sell clothes, standers, wheelchairs or modified toilet seats?  Something is wrong and like I said my "mind goes places where minds don't usually go?"  Is this my descent into madness?

Not to be limited to cute, hugable kids

Like I said, the perfect kid in the perfect stander...bet it sells......

    So tell me, have I descended into the eternal hell of madness?