Editor’s Note: This is a guest contribution from reader Philip A. Dzialo, and it accompanies Tammy Ruiz’s article, Be Not Afraid, Be Not Mean. It originally appeared on Phil’s website, and he offers this in the hope that it helps others.
Expectations drive our lives. We expect our actions to produce certain reactions. Of course, when those actions fail to produce what we need, we experience disappointment, grief and disillusion. Sharon’s new book, Ceramic to Clay, seeks to encourage people to understand trauma, to learn about authentic healing, to empower people to embrace their journeys and to understand their calling at a deeper level. She wants to share her story with those who have experienced life altering events and with the people and the communities who surround them. Her expectation seems clear and, hopefully, will be realized.
My expectations are different. Given the promotion of the book, articles and photos in our hometown media (where Adam spent his first 21 years), announcements through social networking, I expect a resurgence of humans into Adam’s life. His many classmates and a plethora of teammates, his teachers and therapists, our friends and many family members — I expect them to rush here, to call, to send a card to celebrate the life of a thriving, joyful friend and relative. One old friend did immediately visit and it was so good for Adam. Are my expectations unrealistic or hasty? Is it because Adam is non-verbal and non-ambulatory? Are people afraid of a very challenged friend and don’t know what to say or do? Is it because (12 years ago) many promised to walk by our side for as long as it takes and disappeared? Do they reject our path and did they hope that we would usher him into an institution? Will they make up “justification stories” to themselves? Am I wrong to have expectation? Or, is it simply the plague of indifference?
What is indifference? Etymologically, the word means “no difference.” A strange and unnatural state in which the lines blur between light and darkness, dusk and dawn, crime and punishment, cruelty and compassion, good and evil. What are its courses and inescapable consequences? Is it a philosophy? Is there a philosophy of indifference conceivable? Can one possibly view indifference as a virtue? Is it necessary at times to practice it simply to keep one’s sanity, live normally, enjoy a fine meal and a glass of wine, as the world around us experiences harrowing upheavals?
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, 1999 (speech in Washington, D.C.)
So many of our severely challenged children and adults are pure and rich human beings whose lives are often re-defined by the stares, the avoidance, the pity, the indifference of their fellow human beings. There is no higher place in the universe than that reserved for those who honor the lives and the value of the resilient spirit of the profoundly affected by trauma at birth or by accident. And, for those who promised to be with the disabled and their caregivers for the “however long it takes” and either passively and indifferently disappear or actively “make up a story” about why they cannot or will not, well, it is not about getting over it, or moving on, for me it is about confronting their indifference.
Here are a few experiential reflections:
Never ask what you can do. Simply do it.
Never ask, “Can I get you something?” Just get it.
Never just remember someone. Communicate it with a card.
Never wonder if it’s permissible to visit. Drop by.
Never wonder if the disabled would be okay going to a movie or a dinner. Just take them.
Never, ever make a promise because it’s momentarily appropriate and then run from the promise. We have no value as human other than as much as we are true to our word. Our definition derives from being our word.
Learn to change a diaper, connect a g-tube, suction a trach. Allow a caretaker to go out to supper once every so often.
If you question the statements about human indifference, visit a state institution for severely disabled, a state funded day habilitation facility, an elderly set of parents who have just had public or family support services reduced or eliminated by the state.
Also, attend well to the widowed (whose friends also disappear, the elderly, infirm, emotionally torn by personal demons).
In a way, to be indifferent to that suffering is what makes the human being inhuman. Indifference, after all, is more dangerous than anger and hatred. Anger can at times be creative. One writes a great poem, a great symphony. One does something special for the sake of humanity because one is angry at the injustice that one witnesses. But indifference is never creative. Even hatred at times may elicit a response. You fight it. You denounce it. You disarm it.
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. The political prisoner in his cell, the hungry children, the homeless refugees — not to respond to their plight, not to relieve their solitude by offering them a spark of hope is to exile them from human memory. And in denying their humanity, we betray our own.
Indifference, then, is not only a sin, it is a punishment.” Elie Wiesel, 1999
While these reflections confront my feelings about life with Adam, the thoughts and feelings apply aptly to the plight of so many others.
I feel better!
Phil is a former high school principal with a 30 year tenure, a hockey dad to a superstar son who is his hero, a husband to a profoundly committed wife, and a father to a beautiful accomplished daughter. On July 24, 1998 his son, Adam Dzialo, drowned. When he was 12 years old and at a summer camp, he was under water for twenty-five minutes which eventually resulted in a disabled body but produced an indomitable spirit and brilliant soul. Phil believes his son and his family to be in an active state of healing. They devote their lives to Adam’s maximum possible recovery and comfort in his body.