To be Physically disabled ...no logner asking why

Spiritual Life, Winter 2000 by Barr, G Wayne

IN A CULTURE THAT PLACES value on youth and beauty, we are physically flawed. In an economy that practices unfettered self-interest, we cannot compete. Some of us will never know the delight of Mozart or fireflies lighting up a July night or the thrill of batting a ball or chasing it. Though our physical circumstances vary, we who are physically disabled know the inability to function in a normal way.

For me, pain in varying forms and degrees accompany my every waking moment. Since the age of twenty-two, I have struggled with a degenerative disease of the spine and hips; spinal fractures have led to substantial deformity. Over the past twenty years, I have spent countless hours curled up in pain. My steps are measured and my body twisted, bent, and tired. I know the dread of surgery, lengthy recoveries, and learning how to walk again after spinal reconstruction. My vision is often blurry and my limbs frail.

Though my physical pain is often debilitating-and the deformity constraining-the social and emotional results of being disabled can, at times, be the greater challenge. I know the disappointment of hopes and dreams denied. I experience the frustration of limited employment opportunities and the high healthcare costs associated with being disabled. I am often misunderstood. I know the humiliation of watching someone mock my posture or my irregular gait. Sometimes I feel guilt and shame or the need to apologize for being disabled. I encounter those who mince their words or create false hope. I am exposed, unable to pretend. I know rejection.

I do not expect others to appreciate what I physically experience, nor do I expect others to assume my pain. I do not find what I endure especially noteworthy; after all, suffering is a common fate. The question is when and how much. However, I have learned-as have so many others who live with a disease, deformity, vision or hearing loss, AIDS, or other physical ailment or impairment-that suffering offers not only a unique perspective on life but the ability to be countercultural, to reassess one's priorities and that of one's culture.

We are more tolerant. It does not matter what an individual's IQ may be or their social standing or what they drive, wear, put on their face, or how short their hemline or what faith they practice. We do not buy into the myth of individualism; we see the interdependence of all people. Nor are we meticulous. Our lives are imperfect so we do not seek perfection in others. We have learned to live with the unknown. We accept less than ideal outcomes. What most consider serious, we see as humorous or insignificant. We see through the distractions and defenses and realize the hilarity of self-importance. We do not have a need to be correct. We appreciate how fleeting and spontaneous life can be. We have developed skills to manage multiple problems. Since we lack rigidity, we are creative. We are future oriented-we anticipate obstacles. Because we are subject to others' attitudes, we are adept at sorting out contradictory messages. We can recognize condescension and patronizing attitudes. Through avoidance of our disability, we recognize your fear. We are patient.

If you live long enough or suffer a physical tragedy, you will become like us. We cope in a variety of ways, but there is no magic formula. It is not easy. It takes time and faith. However, if you pay close attention, we might teach you that suffering is not as bad as you assume. Through our physical flaws, you will see honesty because we accept who we are. Beneath our vulnerability, our need for accommodation and assistance, you will find sincerity and understanding. Out of our dependence, you will discover heartfelt appreciation. You will no longer place conditions on your compassion and understanding. Of course, you will continue to curse the pain or limitation or cry out in frustration but, because it is a daily reminder of your mortality, you will understand why we persevere. It is not about fear. It is about realizing the joy and beauty of life, a wonder and gratitude that physical pain or constraint allows. All becomes sacred. All becomes meaningful. We no longer ask why.

G. Wayne Barr works part-ime as a mentor-assistant for SUNY Empire State College in Coming, NY. He is also an oblate of Mount Saviour monastery in Elmira, NY.