Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Friday, June 29, 2012

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 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 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...

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