Hell, No, He Won't Go.....

     The decision to place a child or an adult of any age in an institution, residential setting  or a group home, the latter which is a contemporary euphemism for an institution, is never lightly embarked upon.  I remain quite amazed and deeply concerned about the numbers of people, both young and old, placed in residential settings of varying types and incarnations.  Part of me acknowledges that some parents and guardians earnestly believe that it is the best interest of the child to receive care in such a setting.  However, I believe that these decisions are often made so a parent(s) can have a life beyond the role of caretaker. Decisions are made for the sake of preserving a marriage, decisions are made so that other siblings in the family are not short changed, and decisions are made because resilience fades and supports erode.  All logical, all meaningfully deliberated, all made with a great ambivalence and with a healthy dose of guilt.  I have yet to read or hear that the decision is purely in the best interest of the disabled child or person.  Away from a loving home is better in a depersonalized institution or home?  I refer not to disabled people who are in the process of learning self-sufficiency; I refer to the fundamentally, severely disabled whose needs and desires can only known by parents.

       I have nothing but disdain for fathers who leave the family to fend for themselves because this life is stressful and hard.  I have  little but  condemnation for fathers who disappear and do not financially or emotionally support their disabled children.  The fires of hell burn especially hot for these dudes, and it is usually the man who fails to recognize and embrace his paternal bond.  Mothers rarely abnegate their love-bond.  This is certainly an unenlightened social darwinism.

       So given the shallow reasons to move severely disabled children and adults into institutions, residential placements and group homes, what lives  do these precious vessels of life-force face.  Physical and sexual abuse is common in these placements, neglect is more common as patients lie in urine and feces, miss needed medications or feedings.  There are so many stories of caretakers ignoring their charges, stealing what little the disabled have, compromising medication and feeding schedules and on.  Employees of these places are more often than not poorly educated and sinfully underpaid.  The result is that people die; our kids die.  It is well established that all people who are deprived of physical touch and contact die much sooner.  Yet these decisions serve the purpose of those who give their kids and elderly away.  It is an early death sentence in many cases.  Stories of abuse in institutions and homes are legion, daily in media by the hundreds and I  will spare you the horror of the many links I have collected.  It just ain't right!

       I am dismayed at parents who want to be something more than the parent of a severely disabled child...what could be a higher giving and measure of heroism?  What could be more consonant with highest calling of parenthood?  Does ethics and morality dictate these decisions?  Does maternal or paternal obligation dictate these decisions?  Or does self trump the need for a  dignified life of the disabled?  Do institutions devalue or enhance the value of disabled people?  Our society justifies poor decisions, condones a lack of resilience, and allows people to feel justified about dumping kids and adults on the state...a quite uncaring, unaccountable and anonymous entity.  Never is there a discussion of the ethics or morality of institutionalization.  "Out of sight, out of mind" is not a hack expression, it is a statement about reality.  Visiting your kid on a weekend or taking him or her home for a day is symptomatic of this hack expression.

       I would guess that one could criticize my thoughts and musings under the guise that I am very judgemental...I am.  I believe that institutions, residential placements and group homes should be abolished and that monies saved should be used to help parents keep their severely disabled charges in the home.  The cost of an institutional placement in Massachusetts is $250.000.00.  Could we not keep the same person home with mom and dad for a small fraction of the price?  Isn't home the only place that true love exists?  Is it not the singular place where the disabled are loved, cared for with utmost dignity and continue to live and thrive.....?
       And when parents are too old and frail?  Can we make a leap and assume that extended family and siblings inherit a moral and ethical duty to assume the same care?  Or are their lives too important?  Is it not the duty and the obligation of society and family to ensure care for the most needy?  Is that not the criteria by which our society and we ourselves will be judged?  And judgement will occur in future time as consciousness evolves to higher planes?  Our children are our children, not the children of institutions.  Yes, I realize the insufficiency of social supports; I realize the indifference of family and friends in assisting us in the care of our disabled family members; I realize the rationalizations on why those closest choose to be the farthest.  Yet, I realize that group homes and institutions, no matter how wonderfully construed, are grossly inadequate in providing the love which is the lifeblood of the disabled. And no matter how cognitively compromised the person, they feel the love and dignity emanating  from loving care....without those elements there is only death.

     Yes, there are some laudable placements in the world, i.e. L'Arche...an intentional community of residents, volunteers and developmental disabled.  But are there severely disabled, medically fragile members in this community?...probably not.  Nursing home, state institutions, yes...death sentences.  Home is where the severely compromised need to live with love and dignity; home is where the hurting elderly need to live with love and dignity; home with family is where the severely mentally ill need to live, with love and dignity.  Responsibility is uncomplicated: family and extended family is home and society has a duty to provide the supports to allow for this obligation to be met.  There is no greater honor than to care for our sons and daughters and mothers and fathers, for our nieces and nephews, our brothers and sisters.  This is the apex of actualization and one does not need a god or a religion to provide us the reward nor the incentive...duty, obligation and love are required.
      So, my judgmental self says close all the group homes, the institutions and residentials....allow the family to care for their own (with complete financial, physical and emotional supports) and counsel them to understand that providing care is the highest reward,  the utmost self-realization and the deepest meaning.

       

Dark Places...

       I have been reading with great interest comments about the George Hodgins (murder) and Elizabeth Hodgins (suicide) which recently occurred in Sunnyvale, CA.  George was an autistic 22 year old man who was rather severely involved, behaviorally and cognitively.  He was non-verbal.  Elizabeth, his mother,  cared for her son and searched for a day habilitation placement when he aged out of school.  Nothing appeared to work out. No supports, no plans, no real assistance...she decided that their lives should end together.  It's commonplace to refer to this as a :murder-suicide. This is one story of many which follow the same theme....severely disabled child-loving parent!  These stories are legion.

       Many people, especially in the ASD (Autism Spectrum Disorder) community on Facebook, are outraged over the focus which the media has placed on an over-wrought, emotionally depleted care-giver mother.  Commentators focused upon the lack of attention given to the killing of a disabled child and the murderous act of the mother.  Writers and bloggers believe that yes, there was a paucity of services; yes, the mother was over-wrought and that she should be identified as a perpetrator and murderer.  Comments abound that the killing of a disabled child is a heinous action and that it can never allowed to happen again.

       Could there be another side to this very tragic story?  Is the world so black and white that no other explanations are possible nor plausible?  Could, in their dark place, the hidden recesses of the human psyche, there be a place for an act like this to be a act of love?  The murder of a severely disabled child is a heinous event if the parent lives, becomes unburdened and is freed from an impossible life without supports.  Is the scenario  identical when a severely disabled child and a loving, care giving mother leave together?  There are no blacks and white, no absolutes and above all there should be no judgements by those who do not know.  The dark places in our souls can reveal truths no one wants to hear.  So let's explore this further....

      My son is totally disabled and a medically complex human person (sorry, Amber).  My wife and I alone know his body:  how he needs to be fed, how he needs secretions cleared, how his bowels need to be stimulated and retained urine released.  We know how he signals pain and how he signals peace.  We know how to get him to sleep and when to re-position him.  We know how to clear his lungs.  We know how to prepare his pureed meals and provide a host of supplements and feed him over an hour's time.  We know when he is ill.  Doctors depend on us to tell them what is wrong and what needs attention.  Left to modern medicine, he would have his g-tube replaced and a trach inserted with regular suctioning.  We know how to manually release his spasticity.  We know his soul and his body as he is totally dependent upon us.

     Our dark place is that he will outlive us and if he does he will be alone.  Children/adults like Adam (who is now 26, 14 years post accident) usually have one option:  nursing homes, which are cesspools of germs, staffed by some people who are under-paid and blatantly indifferent.  Nursing homes for the severely disabled are rank with neglect, with abuse, with indifference and patients are prone to being sexually abused,  Placed in a nursing home with people of all ages, many of whom have lost their minds and spirits, is a death sentence.  Don't kid yourself!

       My dark place is that my son will outlive me.   My dark place is that no one else knows him, his body and his spirit; and that few really care...they all have to get on with their lives so they can enjoy their brief stays on this temporal planet.  In a nursing home or a residential placement, Adam would die and it would not take long, and even that length of time would be marked by horrific abuse and indifference....yes, that indifference that reduces people to an abstraction.  No one really cares about abstractions!

       My dark place leads me into the fear that my son will be alone and aloneness is worse than death.  He can never be alone, in life nor in death.  He has a father and a mother who love and protect him from the indifference and harm of the world.  My deepest darkest place is my son's aloneness...he does not deserve that nor will I allow it to happen.

       

       Would you condemn us or judge us if we left this plane together?  Would you understand our need to express our love to be together?   Would you mock our belief in the beyond?  Many people believe that their companion pets will meet them at the rainbow bridge and cross over together.  Can we extend that same belief to humans?  Would you condemn us as murderers of a disabled person is if we chose to be together at a point in time?

       Bloggers and newscasters who are  righteous and condemn Elizabeth Hodgins have usually not cared for a severely disabled, medically complex son or daughter and committed their lives to that task.  Black and white judgement is very, very easy to come by. It requires no effort nor an ability to "see and hear" that which is not apparent.  Judgement of others and their decisions is perhaps the greatest of sins, just behind human indifference.  What dark places to you venture to?  Our stories are legion!

Messengers...Our Duty as Parents of the Disabled

Elie Wiesel

Remarks at the Dedication of Yad Vashem Holocaust History Museum

Delivered 15 March 2005, Jerusalem, Israel

There is a frightening character in all of Kafka's stories. It's always the messenger who tried to deliver the message, and is unable to do so. We feel sorry for a poor messenger. But there is something more tragic than that: when the messenger has delivered the message and nothing has changed.

        We are the messengers and it is imperative that we continually and repeatedly keep delivering our message about the plight of the disabled.  Over and over again!  Until that point in the evolution of human consciousness that society provides our sons and daughters all the necessary supports to live lives which are worthy of life itself.  The invisibility, the stigmatization of the disabled must become a thing of the past, not by law or legislation, but by a change in the belief of the dignity of every person.

        I salute and honor every messenger, every blogger, every advocate who calls for a new world where institutions are closed and families have all the resources and supports to care for their own...if we can subsidize oil companies in the U.S. and bailout the biggest lenders, we can provide for the most vulnerable of our society and their committed care takers.  The resources are unquestionably available, the priorities are skewed.  It is in this quest that we become human, to turn away from this responsibility is inhuman.

ADDENDUM:

       I just found this passage from Weisel which explains why there is a need for parents tp continue being messengers, even if no one hears:

The Elie Wiesel Foundation for Humanity

The Elie Wiesel Foundation for Humanity

He told the crowd the story of the sage who visits a town dripping with corruption, from government on down to the people who live there.

“He would go to the marketplaces and from one street to another, saying to people, ‘Wake up! Wake up! Wake up to the needs of your fellow man!’

“In the beginning, children would gather around him because nobody had ever spoken like that. And he went on day after day for years and years,” Wiesel said.

Much like the old sage of his story, here Wiesel got quieter and softer as he continued.

“And years later, the children stopped him in the street and said, ‘Poor stranger, you speak and you shout, but don’t you see that nobody listens? And yet you keep going, speaking and shouting. Don’t you see it’s for nothing?’

“The sage said, ‘My dear child, I know it’s for nothing. They don’t listen and will never change. But I go on shouting louder and louder in this village and that village, on this corner and that corner, because ultimately, I don’t want them to change me.’ ”

A Level Playing Field, Ya Think?

       Many people (friends, family and most of the world) assume that the playing field of human relationships should be level and that everyone should play by the same rules, adhere to the same conventions and that precise and measureable reciprocity should guide all behavior.  Well, mostly this is true; but, in some cases, like ours, it's an untenable myth.
         When you carefully examine why people who offer a helping hand in the beginning  often disappear, it can sometimes be attributed to a perceived injustice "you didn't take our advice", or "well, you could pick up the phone, too" (that is between 4 hours of  manual ABR, 10 hours of machine ABR, diaper changes, pureeing foods, lengthy feedings, appointments and a few precious hours of sleep), or "you're always welcome to visit us at our homes" ( but is your home wheelchair accessible, nearby, has a hospital bed, nebulizer, suction machine and a case of enemas?).  Somehow when taking your child to a movie down the street is a major production, traveling many hours in a wheelchair van with half the house packed in back just doesn't seem reasonable.  But, calling, visiting, etc. is something we should do regularly if the playing field is to be level?  Gee, it's not!
        Also, when you examine why some old friends disappear and you and your disabled child are no longer their social good-will project, you hear the same type of dribble which always assumes the playing field is level.  Here are a few: "Well, you have a phone, too.", "This is too hard to look at, it's like Adam sees into your soul.", "Just so very busy.", "It's depressing.", "You have such a hard life.", "We don't know what to say or do."  And so it goes.  Thankfully, my South and Central American ABR comrades have assured us that this is a cultural, American phenomenon...or so I hope.
          After a time, you realize that the journey is lonely yet personally inspiring; disability exists only in the eyes of the beholder; and inability to move or speak makes for a pure soul, a contorted body is merely a temple of the source.  Few are willing to accept these realities and so they make up a "personally plausible story" why it's too hard to stay connected for the necessary years of care-giving, however long that may be.....authentic healing is a long, loving process.  Parents embrace the process because they connect with the deeper roots of love.