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?

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        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)
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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...

     
       

Nope, You Don't Speak for Me...

     I have spent a sinfully inordinate amount of time trolling the landscape in the world of bloggers on disability issues.    I am often in awe at the depth of insight which arises from the painful journeys of individuals and caregivers who daily encounter the reality of joy, sadness, fear, apprehension, disillusionment, hope and virtually every emotion, all within a brief moment of time.  The cycle of emotion is endless and often uninterrupted.  I feel a kinship with these journeys and uplifted by efforts which I describe as uber-human.  I have learned that there are many paths, many journeys...each private and personal and certainly decisions made which deserve respect and admiration.

     I have also stumbled upon a variety of posts which unnerve me and irritate me as does a splinter under the skin.  Among these is a deconstructionist trend to dissect images and words meant to inspire and to treat them as profane. Deconstruction of words, images and concepts reduces them to small segments which can be criticized, debased and disposed.  Deconstruction fails to recognize that "the whole is greater than the sum of its parts" (Aristotle, Metaphysica). For example, many, including Catholic bishops (the men in red dresses and jewelry of gold) have deconstructed the Affordable Care Act and focus opposition on the few mandates of HHS.  The whole of the Affordable Care Act provides a guarantee of insurance for millions to whom it is now unavailable, precludes prior existing conditions from excluding individuals from health insurance and removes lifetime  caps on benefits.  The whole and benefits to Americans is greater than the sum of individual components.  This is the failure of deconstruction theory and application when the singular components are dissected and dismissed.


     I have always been ambivalent about various incarnations of U.S. states' "Death with Dignity" and "Assisted Suicide" ballot initiatives.  Deconstructionists focus on potential for abuse and a theoretical devaluation of the disabled.  Yet the whole of the initiatives is perhaps surpassed by the dissection of individual components.  The whole, the intention, the high levels of support surpass individual components which are critiqued.  The whole is greater than the sum of its parts, in my mind.


   Disability is a fundamental reality of life; the struggle of the severely disabled to simply live and to hold onto life is a defining moment of their existence.  The fact that the act of overcoming is used by some people to challenge the abled who whine about their state of being is fine with me...it is NOT "inspiration porn"; it's another way to say "why don't you get a real problem?".  And so, I would like to look at "inspiration porn" and "pity porn" as the constructs of some bloggers in the disability world  which fail to resonate with me.  These are concepts which both my son and I reject as antithetical to our beliefs.
 
    “Inspiration Porn” (as applied to disability)  also known as “cripple porn” :   A story or image of an individual or group with a disability that emotionally moves or inspires others (usually non-disabled individuals) due to the perceived achievement or perseverence (sic) of the disabled individual over the obstacle of continuing to live each day."  This is one blogger's definition.  It appears that being inspirational is an ableist convention?  Perhaps, it just is simply inspiration...

   One of my favorite postings on FB is above.  Yes, I want everyone to see Adam, the young man, not the disabled wheelchair bound, non-mobile, non-verbal near-drowning survivor.   When all is said and done, the slogan of “See the Person, Not the Disability,” is based on the absurd premise that disability can be separated from the person, leaving only that person’s humanity. The problem with this line of reasoning, of course, is that disability is inseparable from humanity.  Yes, the person is not their disability and the two can be separated.  I believe unless we make a conscious evolved separation of the two concepts, the person with the disability becomes an abstraction and their life makes no difference.  Severe disability is not a gift, it is a great burden...yet, there is never a day when Adam fails to smile.  See him for who he is, period:

Sickness will surely take the mind                                                   Where minds can't usually go.                                                   Come on the amazing journey                                                   And learn all you should know. The Who, "Tommy"

        In this particular instance, the clear implication is that if we’re not able to make our hopes and dreams come true, it’s because we’re all the things that the average person mistakenly believes we are: narcissistic, angry, complaining, and lazy. But the graphic itself is directed at able-bodied people, with the aim of shaming them out of being upset at actual problems.  And simply what is wrong with that?  If my son's daily struggle to live and radiate joy shames lazy, complacent, indifferent able bodied people to achieve a tad bit more...I think that it's great.  Plan and simple...inspiration needs not be deconstrucuted.

But I think we need to investigate disability inspiration as a form of propaganda that glosses over oppression while simultaneously reassuring normals about the superiority of their ways.  Ok, if that's what you choose to believe, not me...




But inspiration porn cares nothing for social context, because social context only gets in the way of inspiration. So, in its zeal to get able-bodied people to stop being such shleps, inspiration porn manifests itself for their delight in both visual and textual form. Visually, the genre makes use of a photograph of a disabled person with “inspirational” and guilt-inducing text attached, generally along the lines of What’s your excuse? or If this person can do it, so can you!Textually, it consists of a story or anecdote about brave, or gritty, ordetermined disabled people overcoming obstacles and not letting disability get in the way of their dreams.   Guilt is a great, but often unreliable motivator...however, the toolkit is quite limited!

Ok, so is it bad to say "What's your excuse?"  Is it bad to say "If Adam can smile, why can't you meet your reality half-way?"  Is it bad to say to an indolent dolt, "Why don't you get a real problem?"  Are we so politically correct that we refuse to confront indifference?

I believe that in our lifetime we will not see a North American culture which values and embraces disabled people, especially the severely disabled.  I do not believe that our society, in our lifetimes, will provide the supports needed for the children and adults with severe disabilities to be well taken care of.  I do not believe that in our lifetime, American laws like the Americans with Disabilities Act, IDEA, real day habilitation adult programs, comprehensive health care, etc will be truly implemented.  Until that day arrives when human  awareness and conscience evolve to a much higher plane, it is fine with me that my son be an inspiration to the able, that people be reminded to see him as a person and not look at his disability.  It is not ok for others to deconstruct my posters, my beliefs and my ideas...they are mine and they reflect our reality.  It is ok to show some pity...pity is an emotion preferable to indifference which reduces my son to abstraction.  Pity is a narrow gateway to sympathy and finally empathy.  We prefer pity to indifference.  If we cannot have the whole cake, a few crumbs are preferable to nothing.

Porn is a pejorative word and should never be paired with inspiration nor pity.  Deconstruction of pictures, words, images, and other artifacts designed with pure intention has little place in my life.   I do not live in a world of theory, of disability history and research and mind fuck...my reality is a daily struggle for life and simple joy.  That all, folks.  These are just my beliefs and should not be interpreted to speak for anyone but Adam and I.  I do not represent that I speak for anyone else...