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 love....no 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!

Parasites

    Especially relevant for my U.S. friends, but also others around the world who share the same experience!

Jason Read, University of Southern Maine

Ya think.....

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!

Nightmares (by Sharon Dzialo)

    

  My nightmare.  You might be surprised!  It had nothing to do with Adam, his accident, the bumps in his recovery, the fear of losing him.  Nope.  I woke up in a terribly dark place this morning.  My night was filled with images of a long-time friend.  We worked together for years, talked often in that heart-to-heart way, socialized.  Then the accident.  Everything changed and our relationship changed.  She watched as I attempted to stabilize my life with Adam.  We met infrequently and she once told me that she could only spend time with me when she was feeling okay (body, mind, spirit kind of okay).  I bought that story at the time.  And, now to the nightmare.  I was back there, in our old workplace, and I saw her.  I really enjoyed our friendship – we could talk about everything.  This time I could feel a huge smile spreading over my face as I approached her.  She couldn’t see me.  She looked to the left, to the right, and she didn’t see me OR she was ignoring me, acting like she no longer recognized me or couldn’t remember me.  I stood there and watched her greet and hug other people who were in the same space.  It was so painful.  Her partner, another good friend of mine, found me and just sat next to me.  We didn’t need words.  He was always like that – hanging out, sharing the same space.  I miss him too.

         My losses – always triggered by the holidays.  I can’t get away from it, no matter how I challenge myself, my thinking, my choices.  My life is so different now and much of the change is related to what happened to my relationships when I willingly and passionately took on the role of extreme caregiver to our son Adam.  I lost most of my family and friends.  I have heard people say, “well, the phone goes both ways.”  Well, I couldn’t – pure and simple.  I accept that now.  I was not capable of maintaining my old life – work, friends, family.  All of my energy, my life force, was directed at caring for Adam and keeping myself together.  I do wonder how folks could not see this, not understand this.  I needed them to reach out, to come to me, to accept that the playing fields were no longer equal.  Obviously they would only do this if the relationship had been important to them.  Since it didn’t happen I am left wondering if folks just don’t care enough.  It was too easy to let go.  Yes, I know all of the excuses:  Didn’t know what to do.  Didn’t know what to say.  Couldn’t handle the intensity and sadness.  Had their own issues.  I’m not saying that it would have been easy.  I am a different person now with new priorities and needs.  It would have been necessary to get to know my new reality and figure out a way to be present in that space and time.  Very few tried. . .

      
 Now, this sounds like it’s all about me.  Well, I re-visit the nightmare and realize that this is my son’s reality.  Few people see him, know him, love him.  He is invisible.  It’s heart-breaking. But, wait a minute.  I am heart-broken; Adam is not.  I live with the awareness of separation, of loss.  He lives in the moment, laughs in the moment, doesn’t worry about the past or the future.  I have so much to learn from him. 

Expelling Evil Spirits...The Gift of Smudging

        All matter attracts energy.  Energy and matter are constantly interchangeable.  Birth brings energy into matter and death brings matter back to energy in the very same way as when wood burns it become energy and that energy provides the building blocks for new wood with the emission of CO2, ash and other plant nutrients.  The total sum of energy and mass (matter) if you believe Einstein is a constant in the universe and there is always a continual process of interchange.  We never really die, our spirit becomes matter, matters reverts to spirit (energy) and then back to matter,  All matter attracts energy, be it electro-magnetic, ionic or emotional...spirit is energy which attracts matter.  Energy is good or bad, positive or negative; spirit is positive or negative.

       Our Native American elders (and I suspect all our ancestors in tune with nature) have taught us that before a person can be healed or be a healer of others, you have to be cleansed of bad feelings, negative thoughts, evil spirits and negative energies...cleansed both physically and spiritually.  The elders have told us that ceremonies of cleansing must be entered into with a good heart so we can walk in a sacred manner and be helped by good spirits to enter a sacred realm.
        The disabled, their parents and care-givers, therapists and advocates are fundamentally vulnerable to  attracting negative energy and having it invade home and spirit.  Need invites negative energy in the form of unresponsive bureaucracies, indifferent family, relatives and friends, unavailability of personal and social supports and the fragility of bodies riddled by disease, by accident, by injury, by cruel twists of genetics.  Without profound need and dependence on the goodness of others, indifference would not play a significant role of devastation of the human spirit.  The vulnerable attract the stares, the glances, the rude and  disrespectful comments of the "uninitiated into the world of disability."  Profound vulnerability attracts the negative energy of "no response" or pity or disdain.
         As children of the "land of disability", certainly not the "promised land", we are called upon by many to forgive, to overlook and reach beyond the negative energies and spirits that we confront on a daily basis.  And while forgiveness is possible and laudable, it is an intellectual process.  Release of the energy of negative spirit and attraction must occur on the cellular, the energetic level where it resides to rear its ugly head.  This release of our evil spirits allows us to move closer to a state where healing is real and our role as "wounded healers" can be an effective tool of caring for those whom we are committed to care for.

        Our elders throughout civilizations used the energy of plants to cleanse us and our homes of evil spirits.  We have been taught that smudge and incense attract the negative energetic fields and the evil spirits and create positive and clean zones of safety at the very core of being.  Smoke attracts itself to negative spirit and energy and  releases it into a space where it can be regenerated.  Smudging is very effective when you have felt depressed, angry, resentful, unforgiving.  It is effective in combating the deep injury of human indifference.  It is a ritual which helps us and our children in their journey.  Certainly effective and certainly worth a try.
         The process is simple:  Gather dried sage, cedar, sweetgrass and rose.  Place it in a vessel like a large sea shell (although some elders would frown about the use of shells.)  Ignite the mixture in the vessel and use a feather (I prefer a hawk feather) and fan the smoldering mixture and fan it about the house, about the participants in the household.  The change in energetics is quite immediate.  Sage heals and expels evil spirits and negative energy; cedar purifies with assistance of the Source; sweetgrass invites goodness, blessing and warmth.  The combination transmutes evil spirit into life force.  Plant medicine, when used with thanks and giving, has the power to heal life and its participants...especially the very vulnerable.

        The shell represents water; the unlit herbs represent earth; the lit herbs, fire, and, the smoke air.  So, this is very similar to the elements of healing of Chinese traditional medicine.
        I offer this as an attempt to make life of the disabled and their families and caretakers easier and holier and purer.  Healing is intensified in a fountain of purity freed from evil spirit.  All you can do is give it a try and believe.  You may need little else from the energetic world.  Do it often and do it everywhere!

Blessings and freedom and health

           

In The Land of Stupidity...The Village Idiot is on the Loose

       After all the blogging stories that we have read and posted about the continuum of discrimination against people with disabilities which range from simple invisibility to blatant indifference, I had assumed that we had heard and experienced it all.  Well, that is not until you enter the land of stupidity and evil which can be found festering in the idyllic hills of New Hampshire in the good olde USofA.

Martin Harty, not my grandfather

       A 91 or 92 year old state representative (depending on which paper you read), Republican Martin Harty of Barrington, N.H. told Sharon Omand, a manager of a community mental health program, that "the world is too populated" and that there are "too many defective people."  When asked what he meant, she said Harty clarified, "You know the mentally ill, the retarded, people with physical disabilities and drug addictions --the defective people society would be better off without."
       The old fart went on to say, "The world population has gotten to big and the world is being inherited by too many defective people."  When asked what we should do with them, Harty said, "I believe if we had a Siberia we should send them to this and they would all freeze and die and we would be rid of them."
       While New Hampshire House Speaker William O'Brien stated that he didn't endorse Harty's comments about defective people, he does respect the representative's "longstanding commitment to protect the values we cherish." (Concord Monitor, March 11, front page)
       Harty then said, "I was kidding with her and it kind of got away from me.  It was a girl that wanted more money for crazy people, the people ... a good percentage of the homeless are mentally disturbed.  I said maybe they can rent a spot in Siberia off of Russia."  The Republican State Committee quickly disavowed Harty's comments, but noted that "We respect Mr. Harty's service to our country."
        To simply say this man (and I use the word loosely) is a few cans short of six-pack, or that the the light is on and nobody is  home, would be very mild understatements.  To say that his comments betray the humanity of people would be kind.  Plain and simple, he's an idiot.  Hopefully, the village which lost its idiot will soon come and reclaim him.
        Of course there is a petition started to get the man off the political trail, please sign at: http://www.petitionspot.com/petitions/RepHartyMustResign
        Perhaps we should start one one to get him out of the human race?
        Please note that I refrained from making comments on either Republicans or Tea Party folk...I thought that was rather big of me.
        UPDATE:  The Concord (N.H.) Monitor is today (3/14/2011) calling for his resignation. http://www.concordmonitor.com/article/245740/in-over-his-head-lawmaker-should-quit
         UPDATE (Again): This whack-job of a human finally resigns citing "slightly unfavorable publicity" which has made him less effective.  http://www.fosters.com/apps/pbcs.dll/article?AID=/20110315/GJNEWS_01/703159928/-1/FOSNEWS  Thanks to all who contributed to the slightly unfavorable publicity!
      
          And, he still refuses to apologize!

On Being Grateful.....

     My wife told me that I should blog about gratitude today.   Today, of course, is Thanksgiving and commemorates the day of our first (and last) Caucasian and Native American communal feast which celebrated a sharing and appreciation of our diversity and newly arrived at cooperation...shortly, thereafter we plundered their land, raped their women, stole their children and  defiled their connection with source and imposed Christianity.  I "should" celebrate Thanksgiving but something rings a bit eerie.
      Then, my wife read me a tribute some one wrote in the local paper.  They were thankful for sight, because some people wake up blind; they were thankful that they had hearing, because some people greeted the day without being able to hear; they were thankful for the ability to walk because some people wake up to start the day without this ability, etc.  They probably forgot for to be thankful for the gift of thinking and expression because some people wake up without the ability to express and think coherently.  Of course, these "feel good" diatribes always credit god (whoever she may be).  I believe the missive is "There but for the grace of god, go I...."  Frankly, god is neither responsible for your sight or someone else's lack of it or for your lack of challenge or someone else's profound challenge.  She didn't make it happen nor will she make it go away.  So I found  being grateful for happenstances in human existence (either positive or negative) an energetic depletion. Anyway, I always believe that the more challenged a person is, the more pure spirit they are; they are  more godlike.  Things are the way they are and our humanity derives from a simple acceptance of that moment which does not last that long in the scheme of things.

         So, being an ingrate, I choose to blog about what I honor in this life:

• I honor my severely challenged son (my daughter dislikes the word "profoundly disabled" so I honor her wish).  I honor the truth that he chose, before this particular existence, to have me as his father, Sharon as his mother and Aimee as his sister. I am humbled and try to live up to the immensity of his choice.
• I honor my wife who is deeply committed to Adam's recovery and who has eloquently written about his journey.  I honor the reality that before this existence she chose Adam and I to join her in her quest for truth and genuine humanity.  I honor her unflinching commitment to Adam and to her helping me develop a healthy disdain for allopathic medicine.
• I honor my daughter, Aimee, who also chose before this existence to walk the path with Adam, Sharon and I and to share the trauma and the joy of this experience, but also to rapidly learn about the nature of many people and about true love.
• I honor the reality that this family of four, all for different reasons, chose to travel this journey to a higher level of enlightenment together...I know there are no others that I would want to walk with.
• I honor those few humans who I have encountered who are people of their word.  They always do what they say, even if the saying was "near impossible."  Our word defines who we are, it is the crux of our existence, it is "I".  It is god...."In the beginning was the word, and word was god..."
• I honor our commitment to fully understand why we allow certain people into our lives,why we attract certain types of people into our lives and why we have to let go of some people with due deliberation.

         So, I rejoice in the fact that we have chosen to walk an uncommon  road together.  "Word" is the important facet which defines our human journey.  Teilhard de Chardin said it best, "We are spiritual beings having a human experience."  I honor all who have chosen the "road less traveled..."

Wounded Healers....Parents and Caregivers of the Disabled

                       

                                             A traumatic injury occurs at birth, or three years later, or twenty years later to your child...there is no magic formula which predicts what happens to you.  The reality of your child's trauma fills ever cell of your body; your soul is helpless; you make promises to always be there for him/her.  You are only as worthwhile as your word.

       A parent of a young or adult disabled child experiences every conceivable emotion.  You are at once hopeful, optimistic, caring and always looking for ways to heal.   At the same time, you are hyper vigilant, quite capable of catastrophic thinking, chronically anxious and always in fear of not being "safe."
This is the world of PTSD (Post Traumatic Stress Disorder).  In most cases, the trauma is focused on a single event (death),  or a series of similar events (war); in the case of parents of severely disabled children, the trauma is a continuing event.  It is not a past event which you can deal with in a number of therapeutic ways.
       So for parents of very disabled children, life is about survival...your survival and that of your son/daughter.  Life consists of avoiding everything which could impinge on that need to survive.  You do whatever it takes, at whatever expense.   There is no therapy nor medication to remove that imperative....you survive and out of this quest you slowly thrive.  The road is dark, has many curves and the journey is always in the quest of the light...the quest does not end.