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).

About Us, But Never, Ever With Us.....Re-kindling PTSD

   Parents with children who are severely disabled inevitably suffer from PTSD, especially parents whose child's disability occurred as a result of an accident.  Sociologist Olshansky and later Susan Roos described this phenomenon in depth as "chronic sorrow."  Adam drowned on July 24 1998 after being under water for 25 minutes during an absurdly orchestrated  summer camp activity.  He was eventually revived at a trauma center.  That was nearly 15 years ago.  The trauma which we experienced  has been dealt with in  many ways, purged through ceremony, therapy and medication.  We "should" have gotten over over it.  We "should"  never relive the horror of imagining a child struggling for life, helplessly, under water in darkness and  fear embedded at the most deep cellular level (physiological terror) .  We "should" have gotten past anger. Right?... honestly, there are some wounds that never heal.  One doesn't get over it because someone else declares "it's time...get over it."  Trauma is relived and then triggered by many events, over and over again.  As a family, we have worked through the many layers of trauma,  We do not walk through this life as "undetonated bombs.'  However, a recent  horrific and unacknowledged experience, found us in the dark throes of PTSD!
     

Robert Kauffman, Ph.D.

 the look of compassion and understanding?

.

        One "academic", Robert Kauffman. Ph.D.  (Rate Mt Teachers Link)  is, in our opinion, very responsible for our recent pain!  Kauffman recently published a college textbook, "Integrated Risk  Management for Leisure Services" in January of 2013.  He has a Ph.D. and is department chair in parks management and recreation at Frostburg State University, not exactly a stellar monument to academia. Frostburg State University's ranking in the 2013 edition of Best Colleges is Regional Universities (North), 124. (US News and World Report).........(and ranked "C" in academics at College Prowler)
.

Amazon Best Sellers Rank: #2,883,638 in Books  (as of 7/10/13)
Amazon Best Sellers Rank: #2,922,124 in Books updated 7/13/13)

Well, Kauffman wrote this rather impoverished book with a multitude of references to my son's drowning.  He NEVER communicated in any way with us as he  was "writing" this text", never asked us to proof the text for accuracy, never asked if it was permissible to share Adam's story, never checked what effect it could have on us, never communicated post publication that he wrote about our son.  He never gave a second thought that resurrecting someones trauma was an issue.  We first found out about this debacle by googling Adam's name.  Well, trauma resurrected its ugly head, undifferentiated pervasive anxiety  blew over a calm spirit.  My question was "do you really care about Adam's and the family's true story?"  The book attempted to give advice to institutions to embrace the victim, yet the author blatantly denied the victim's pain and maintained a distant indifference.  Just like you would expect from an arrogant academician.  There was another co-author, Merry Lynn Moiseichik; however, she assured me in an e-mail that she did not have a role in selecting Adam's case nor writing about it.  Publishing the story of a disabled child, who can neither speak nor move, without his or his guardian's permission is classic abelism...outright simple.

        Sharon (my wife) reached out to him to explain the effects of his actions which he casually dismissed.  I confronted his actions and asked that he genuinely apologize for leaving us out of the entirety of the process resulting in re-opening of old scars.  He replied that I would apologize to him someday....the typical response of an obstinate academician.  Mediation has saved our sanity in the past, so I offered to pay all of his expenses to come here for a day, pay for a professional mediator, pay for it all....to close the wound and to have the man understand the effects of his actions or lack of actions on our lives...PTSD.  He never responded.  Our mediator, who worked through issues with us for months, even spoke with him by phone.  No response! It seems like the diametrical opposite posture of embracing the victim.  Use their kids story, never tell them, have them discover this apparent profiteering activity on line and essentially tell them to ......(fill in the blanks).
          In the last 15 years, several stories have been written about Adam's drowning at the hands of a summer camp.  Many journal articles have been written.  Countless newspaper articles were published and at least a half dozen news specials released on local and national television.  In every instance, the writers and producers communicated with us, received our permission, asked many questions and provided us a copy of the product.  Why?  Because they cared and were interested in the truth.  Kauffman NEVER communicated because he apparently didn't care about the effects of his words and then never cared when he was told that they opened wounds and scars which should have been left untouched.  Is there a clearer way to describe a closed heart?   To not even acknowledge a request for a fully paid mediation is a primary sign of arrogance and certainly a sign of a coward.
         Of course his text failed us at many levels, primarily it also failed Greenfield Community College, the sponsor of the summer camp.  He was adept at pointing out how the college failed (adept but not accurate) yet neglected to expound upon how the college and its president engaged in mediation, apology and closure.  Of course, he acknowledges none of this.  Piss on someone by failing to tell a full story and walk away.  He owes GCC a full and sincere apology and acknowledgement of their commitment to do that which  was morally and ethically right.  While Kauffman was legally in the right since Adam is a public figure, I would hardly use the words ethical or moral in describing his approach.  To tell the truth, the book wasn't even that good, not at a $67.00 price tag....talk of my perception of purported profiteering.  I have lived "leisure activity trauma" and its aftermath through six years of bitter litigation and could give advice in one paragraph. Simply and always accept responsibility for any incident which occurs under your care and ask the family immediately "what do we need to do to make this right!"  It is easy to write about something that you did not live on a daily basis.
       And then we have Frostborg's President, Jon Gibralter, Ph.D.  After an impassioned three page letter from me imploring his assistance in intervening with Kauffman...nothing!  Another righteous hero!
       There is a lesson to be learned here.  When dealing with parents of disabled children who hold trauma in every cell of their being, communicate with them.  When they tell you that you have failed to communicate, acknowledge that they are speaking their truth, apologize and do better...do the right thing.  They know their realities, they know their pain, they know when they are being patently dismissed  ... there is no greater evil than the evil of non response to a person in pain.  Traumatized people never just get over it, their wounds do not completely heal, no matter how hard they work. They care for their disabled kids 24/7 for life because it's the worthy thing to do.  To refuse to engage with these wounded warriors when they request it is the antithesis of  a good human being.  There is still much more to come....

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, The Perils of Indifference, 1999

NB: I did inform both gentlemen that I wrote this post which referred to them...

     
       

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!

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

           

We Do Not Take Care of Each Other!

       Every once in a while we confront the Truth.  It hits us in the face like a locomotive plowing into a stone edifice. What to do?

Keith Olbermann: Face It We Do Not Take Care Of Each Other!

Life is Short and assorted other Bullshit"isms"

       Life caring for a severely disabled son is not a cake walk, nor a stroll in the park.  Neither is it analogous to caring for an old dog, a rebellious normal teenager, or a demented, elderly parent.  Why might you ask?  Well, old dogs are supposed to be incontinent, regular kids are often all-consuming pains in the ass, and the old folks are supposed to act like old folks.  A twenty five year old who is non-verbal and non-ambulatory and a lot of other "non" stuff falls into a totally different category which defies typical definition.
       People who should be sociologically close often avoid all attempts to be useful or helpful.  They view you as strong, and capable and able to handle any emergency, be it a long term or short term emergency.  Their view is skewed in this inept direction because it provides a convenient rationale for never stepping up to the plate.  The one thing that these "people who should be sociologically close"  have and readily offer is a litany of platitudes and meaningless expressions which serve only to piss ya the f..k off.  Here are some of big offenders:
       Pray for miracles & Ask and you shall receive:  Yeah, right!  First, you have to believe in a personal god and I don't.  Second, you have to believe in miracles, and I don't.  Did you ever hear about the miracle where god re-grew an arm that was amputated above the elbow?  Or how about the eye that was poked out by a stick and re-grew?  And the asking/receiving thing?  I've been asking to hit the big lottery for years even promising to give money away...haven't received anything yet.  Is 13 years of asking not long enough?
       I don't know how you do it, they'd have to put me in a rubber room:  You do it because you love your son and because it's the right thing to do.  You sociologically close people could learn to do it for a few days, so that we could get away without the kid for a weekend.  We could teach you, you could learn, it's not rocket science.  How's this: Get Over It! Stop being a marshmallow 'fraidy cat and step up, we deserve  a weekend off every thirteen years.  Don't we, sociologically related people?

       Well, it could be a lot worse!:  You're right on this score.  The kid could be more crooked than he is, he could never smile, he could seize and vomit all day!  So right, it could be worse, but still it's pretty tough for parents in their 60's.  We could have had to make a decision about pulling a plug, but didn't have to, although some people have said it would have been better if he just checked out.  A preponderance of idiots on a small planet?  This paper if just for you. (on the right!)

       Calm down, Time heals all wounds, Life is short!  The trinity of phrases which are often offered when people's blatant indifference toward you and your son rankles your soul.  You either confront them or walk away from the negative energy. Everyone wants everything to be mellow and superficial.  Well, I have not the time for mellow, superficial folk.  I have no time to gossip or spread rumors about sociologically bonded people.  I will not calm down in the face of indifference; time will not heal the wounds of indifference; and, life is not short...it is endless.   So be a part of the journey and move forward with us or get the hell out of the way.  Help, be positive and be supportive.  If you can't do all three, stay away.
       God helps those who help themselves!    Not true....
       You need to get more help!  So right, my sociologically bonded unit...so get off your ass, come down for a week and take care of us so we can take better and more relaxed care of Adam. You have no idea about finding, hiring, training, trusting someone to care for a kid who can't move nor speak.  Applicants are often dirty, stupid and chronically unemployed and chemically dependent.  It's easier to get a dog-sitter, but not by much.  We have gone through more care-givers than you have moles.
       I know how you feel! I know what it's like!  Unless you are part of that .05% of the population who walks in "our shoes" or "moccasins" you do not have a clue nor will you ever.  I would, however, like to give you a brief experience.  Please ask.....
   

       Blood is thicker than water! Blood means family and relatives, I guess.  Well, blood coagulates, blood thins, blood clots, clots cause strokes, blood gets infected, blood gets sucked by vampires (real or psychic).....water, on the other hand just gently  flows....I'll take a long, cool drink of water, thanks.
       You should join a support group!  Ok, will you mind my son while I am commiserating with other parents of severely disabled kids?

        Every cloud has a silver lining! Look on the bright side! Yes, I have become a deeply spiritual, god-fearing, humble, loving, compassionate human being because of the depth of my experience.  Actually, my silver lining is the development of a keen bullshit detector with regards to the hearts of others, especially my sociological unit.
        Get over it! Get on with you life!  Up yours, and I wouldn't trade my life for anyone's. I am moving on with my life daily.  I could just use a periodic reprieve.  We all need a break from ourselves.
         I'm sure that parents of severely disabled kids have faced these and many other platitudes as excuses for avoidance of involvement with people like us.  It's probably better to say nothing that to say something which triggers and irritates.  So just to be on the up and up, this is a partial list.  You can help me by adding more.

The following are my rebuttals to those who have incensed me with trivial statements about life:

As a dog returneth to his vomit, so a fool returneth to his folly.
 Bible - Proverbs 26:11

Every ass loves to hear himself bray.
 Proverb of Unknown Origin

    

     

Thought for Today (2)

Perfect behavior is born of complete indifference.

Francois de La Rochefoucauld

And, Just Who Would Care? And, Just What Has Really Changed?

         "Indifference elicits no response. Indifference is not a response. Indifference is not a beginning; it is an end. And, therefore, indifference is always the friend of the enemy, for it benefits the aggressor - never his victim, whose pain is magnified when he or she feels forgotten."

- Elie Wiesel

Elie Wiesel

       I have been plagued and obsessed with the notion of human indifference for some weeks, to the point of losing a sense of moral compass.  When I see my disabled child treated with indifference by those who should evidence a modicum of care, I am filled with rage.  When I see people who believe that a short phone call on a sporadic basis to check on "how things are going" without a physical presence that demonstrates clear evidence of caring, I am filled with rage.  When I face people who refuse to respond to simple requests for kindness or help, I am filled with rage.  These actions, singly or collectively, reflect that depraved indifference which reduces the other to nothingness, to the mere status of an object.  It produces a visible pain which is elicited by an invisible response from the other.  We are all lessened by every single act of indifference.

       There is a commonly held belief that society has evolved and changed for the better, that there is an increased sense of acceptance and inclusion of diversity.  After all, women are now allowed to vote and guaranteed equal pay and access to reproductive options,  blacks are no longer restricted and oppressed by white supremacists, gays and lesbians are free be open and allowed the same rights as all, and the disabled have access to services which were hitherto relegated to the warehouses and boiler rooms in the bowels of society.  So much has changed and evolved, but has it really?  All these changes were changes prescribed by law and enforced by criminal and civil penalties.  Change was the result of advocacy, demonstration, protest and conflict as people battled for acknowledgement of basic human rights and entitlements.  Change was the result of good hearts forcefully united against discrimination and oppression.  But what changed except the LAW? What price was paid to change the LAW?

       I still see an abject refusal to embrace women and their right to choose, a refusal to embrace gays and lesbians as equals in a heterosexist world, a refusal to embrace minorities as friends and neighbors, a refusal to help immigrants integrate into our world, a refusal to warmly and compassionately enjoin the severely disabled in our lives and activities.  People of good heart do embrace, include and welcome people without respect to difference.  People of bad heart follow the letter of the law.  There is no societal and familial change without the heart open.  I have seen little change in the heart of man and an abundance of legislation.  Where is the real change?  While slurs are less overtly in evidence, while services for the handicapped are readily and reluctantly available, while fundamentalist religion poisons the rights of humanity to choose on issues dealing with human sexuality and reproductive choice, while the likes of Peter Singer echo the maladies of some "legitimated" contemporary ethics...what has changed?  Has the pool of people of good heart enlarged?

        As we become more indifferent we lose the trait that makes us human – compassion. And as Edmund Burke warned, “The only thing necessary for the triumph of evil is for good men to do nothing.”   I am so reminded of Paddy Chayevsky's screen play, "Network", as Howard Beale proclaims over and over, "I'm mad and hell and I'm not going to take it anymore..."   

Howard Beale (Peter Finch) delivering his "mad  as
hell" speech in "Network"

       When I view my world and my son's world, I am filled with rage.  I do know that rage does not produce change.  When I view our worlds, others often impart to me the need to forgive the indifference and shortcomings of others.  Forgiveness, I believe, does not produce change.  Forgiveness seems to be a construct that allows the other, without acknowledgement of wrong or apology or change, to continue their behavior and allows the aggrieved to move on by repressing the rage.  Slow breathing and meditation does not produce change.

      I would rather choose my rage than opt for human indifference.  I would rather have no friends than accept those who are indifferent.  I choose not to forgive that which is unforgivable.  If you treat my son with indifference, if you assume that he is less than a full person, if you turn the other way because you are uncomfortable, I am filled with rage.  And why should it be otherwise?  You have taken beauty and purity and made it "no difference"...as if he did not exist.  So people still tell me times have changed?  Really?

       And what produces the change I desire?  Very little has a long enduring effect on the minds and hearts of people who are closed.  My inability to effect that change fills me with rage....this can't go on because rage poisons the body and soul.  It immobilizes you as an agent of human difference and engagement.  How do you move on?  There are few choices.

       I believe that it is vital to confront every instance of indifference that you encounter with a calm, deliberate, pointed statement of how this behavior effects and produces an unseen diminution of the full humanity of the person.  I believe that a clear explanation must be given of what our children need to be embraced and warmly accepted by that person, that friend or that relative.  I believe that if a person accepts and opens his heart to having been  indifferent to my son or others, then an apology must be given which recognizes that indifference, the effects on the victim, and a resolution for change.  Forgiveness  is always the function of a genuine apology. (On Apology by Aaron Lazare is one of the most influential books I have read on this topic.)

       If this approach fails, and it often will, there is no choice but to walk away. The guilt and shame of the indifferent who are so confronted is often very short-lived and allows them a "story" which they can use to walk away first.  There is no room in my son's life for either my rage at others' indifference or shame, or the negative energy that those indifferent others bring into his life.  I will never allow him to be of "no difference."  Both need to be excised with direct kindness and bold confrontation.  The failure of kind confrontation must be met with a sharp scalpel which excises the tumor and the cancer which can kill us both. 

Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction.  Elie Wiesel 

Never again...

    

Coming Attractions......

    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 Wiesel

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!