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In memory of Jay Turnbull 1968-2009.

Editor's Note: Because Rud and Ann Turnbull, who founded the Beach Center on Disability in 1988 on the campus of the University of Kansas, have been such strong, clear voices in the world of disabilities throughout their son Jay's life, it seemed only fitting that their voices be heard in the wake of Jay's death. All at EP offer their heartfelt condolences to the Turnbull family and express our sincere thanks to Rud and Ann for accepting our request to write this tribute in memory of their dear son, Jay.

Disability is part of the human condition. So proclaim the laws that benefited my son, Jay.

Death, too, is part of the human condition.

We all must confront both, in due time. But due time is not ours to control.

I always expected I would die before Jay. Then Ann would die after me but before Jay. And then, some 20 to 30 years from now,

Jay and his sisters, Amy and Kate, would die.

I was wrong, dead wrong. Jay awoke on the morning of Wednesday, January 7, got up, excited about the day, eagerly made up his bed, put out his clothes, said "waffles" when asked what he wanted for breakfast, and, as he did every morning, went to the bathroom and waited for his friends, Tom and Regan, to help him start his shower routine. Instead, Death came.


The medical cause of his death: ventricular fibulation--instantaneous, painless, the "best death." The real cause of death: God had sent Jay to perform a mission. With help, Jay had accomplished his mission. God called Jay home.

Medicine explains; Providence justifies. Jay reversed people's lives. He was my unexpected son, the unexpected gift garbed in disability. He turned my world upside down, challenging all assumptions, norms, and expectations. Even his death turned my world upside down, reversing all of our family's anticipations.

He had been in a charity-based preschool operated by those of Caucasion descent. Yet, one of the staff, Cordelia Bethea, an African American aide, took him to her home for six months when his biological mother (not Ann) and I could not be home to take care of him.

He was in often-segregated special education classes from the age of seven through 20. Yet, in his last year in school, he earned his varsity letter as a manager of the football team and won the respect and affection of gifted peers.

He failed group home living and sheltered workshop employment. Yet he later lived in his own home for 20 years and worked half-time for a regular wage during those entire 20 years. He needed support in all matters. Yet he was the one who led us to do right by him.

He would have been served in typical congregate settings without much regard to what he wanted. Yet he benefited from self-directed Medicaid for nearly a decade, allowing us to apply those funds to support Jay to shape his world to suit himself.

He had infrequent aggressive and more-frequent self-injurious behavior. Yet he turned those into challenges to his family and friends, demanding that we should learn how to honor his choices. We could not wholly change him. Yet he wholly changed us.

He was our best teacher. Yet he usually gave us the final examination before he gave us the course, always finding new ways to "be" in this world and then putting us to the test to adhere to his choices.

He was regarded for many years and by many people as dependent. Yet he was capable of doing much for himself and gave as much joy to others as he received from them.


He often was unconscious of his effects on others. Yet he inspired families to seek the enviable life, the life we all want to live.

He could not express himself well except by mood, behavior, and music. Yet he was the principal actor in a narrative that Ann, Amy, Kate, and I have told for more than 35 years. He was the voiceless man; we were merely his criers.

He could not understand liturgies or comprehend theology. Yet his recitation of the Lord's Prayer was word-for-word perfect; he emphasized "the Power" when characterizing God; and he always ended with prayers for us, for Tom and Laura Riffel (his principal caregivers) and their family, for his friends from long ago and from today, and, at the end, for "all the good people." He was illiterate. Yet he was full of the spirit of the divine.

He was less able. Yet he was never less worthy of our best abilities.

By dying so unexpectedly, he challenged us to confront shock, grief, sorrow, mourning, depression, anxiety, denial, disbelief, and resignation. Yet by dying, he taught us once again how to celebrate and be grateful for him and his life.

I often recite Dylan Thomas' poem when I think about Jay: "Do not go gentle into that good night ... Rage, rage against the dying of the light."

And then I turn to ancient hymns and their embedded prayers: "The strife is over, the victory won. Alleluia." And "Time, like an ever-rolling stream, bears all its sons away." And, "Abide with me, fast falls the eventime; the darkness deepens, Lord, with me abide." We are told that love conquers all. That is so, even death. But faith makes bearable the otherwise unbearable. And narrative--the heroic narrative about one man's life--gives hope to others unknown.

Jay Turnbull is inseparable from those three words: love, faith, and hope.

They are his ultimate significance.

By Rud Turnbull on behalf of himself; Jay's mother, Ann; and Jay's sisters, Amy and Kate
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Author:Turnbull, Rud
Publication:The Exceptional Parent
Article Type:In memoriam
Geographic Code:1USA
Date:May 1, 2009
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