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FEATURE:
Faith and Disability
June 1, 2001    Episode no. 440
Read This Week's July 25, 2008
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BARBARA VOITEL: I lost both legs; I had strokes, blood clots to the heart and lungs.

JUDY VALENTE (to Daniel Kaulback): What did the accident do to you?

DANIEL KAULBACK: It paralyzed me from the chest down.

VALENTE: The catastrophic things that happen to people: a 12-year-old girl suffers a stroke; a four-year-old goes into toxic shock; a high school football player is paralyzed during a game.

Rocky ClarkROCKY CLARK: I got tackled. Went down on my left side, hit my head.

VALENTE: Helen Betenbaugh, an Episcopal priest, has been asking: why does God let it happen? A childhood polio victim, she later suffered a spinal fracture. When she was 34, and the mother of two small children, her condition worsened, and she learned she would be in a wheelchair the rest of her life.

HELEN BETENBAUGH: It's loss, it's loss, it's loss. It's loss of movement, it's loss of possibility for activity. It meant "no" to so many things. Where's the "yes," God? Just show me where the "yes" is.

VALENTE: A few years ago, Helen began to write a prayer, about human affliction. What came out was a torrent of words -- a five-page lament on disability. With painful questions.

Rev. Helen BetenbaughMS. BETENBAUGH (reading from poem "Creating God"): You made the finest sands; fields of green grass cool on the soles of our bare feet on a hot summer's day and streams to hike alongside with loved ones. Today, thousands were born without feet or legs. Or with legs so twisted or spastic that they would never walk on them. Thousands more lost the use of theirs because of injury or disease And it was evening and morning of another day. Did you call this good?

VALENTE: To many people of faith -- especially the disabled -- it is a mystery. How can the loving, omnipotent God they believe in condemn them to a life of pain and suffering?

BRUCE ASTARITA: Not many minutes go by when you're not thinking of God. And you curse him in one breath and when you exhale you might praise him.

REVEREND DAVID KYLLO (Chaplain, Rehabilitation Institute of Chicago): It's an emotional and social crisis, but also very much a spiritual crisis. They're wondering, where is God?; what is God to me during this time? Sometimes the question, why did God do this to me. But that's not so much the big issue anymore. They want to know where God is.

Rehabilitation patientThis is the Rehabilitation Institute of Chicago. Once a week, a Catholic mass is held for families and the patients, crippled or brain damaged by disease or trauma. David Kyllo is the chaplain.

REVEREND KYLLO: Anger is a big issue. People oftentimes say, I'm sorry, I'm angry with God. I apologize for that. My question back to them would be, "Why not be angry with God?" God can certainly take it. If this God ... created us and our emotions and our feelings and everything, that's okay to express it. And oftentimes that's a good letdown for the patients.

MS. BETENBAUGH: One of the things we've done a very poor job of in the church is allowing anger. In fact, celebrating anger. I think a lot of it's out of fear of God. That, if the person was zapped to start with, it's a punishment from God. Then, to confront God, to be angry at God, is to risk further zapping.

(reading from poem): What, for Christ's sake, would it take for you to hear us? We are yours, yet we see you distant, irresponsible. We see you washing your hands of us just as Pilate washed his hands of your son.

Eric LippERIC LIPP: I was quite angry when I first got to the Rehabilitation Institute. I was quite upset. It was difficult to pull through that.

VALENTE: Eric Lipp is doing pool therapy, ten months after he came out of surgery -- a quadraplegic.

MR. LIPP: When I woke up that day, I was in such excruciating pain that there was really nothing that could take it away. The only thing that could relieve it, or make me feel better, was looking toward God to give me strength.

VALENTE: Today, Eric walks with a cane. The disease, which he inherited from his mother, killed her at the age of 44.

MR. LIPP: Keeping the faith is what will get you through. It's the only thing you have to fight disease. Modern medicine is good, but its not the all being.

VALENTE: Allen Heinemann, a rehabilitation psychologist, has studied the short-term effects of disability on a patient's spiritual life -- in particular, the often-asked question: "Why me?"

Dr. Allen HeinemannDR. ALLEN HEINEMANN (Rehabilitation Psychologist): The major conclusion we came to is that difficulty in resolving that question is the big issue. If you stay stuck on why did this happen, why did God do this to me, those are the people who are gonna have difficulties down the road.

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VALENTE: An unexpected finding: people with higher educational levels found it harder to accept their disability.

DR. HEINEMANN: It's because they can imagine more possibilities, can consider alternative explanations, and as a result of that can struggle more to make sense of the experience.

MS. BETENBAUGH (reading from poem): When and where can we hold you accountable? Where is quality control? Customer service? Where do we get exchanges? Must we expect less of you than we do of each other? Hear our prayer.

VALENTE (to Ms. Betenbaugh): Was it out of anger or frustration that you wrote the lament?

MS. BETENBAUGH: Neither. It was out of profound faith. I was terrified when I wrote that. I was afraid. I mean, when you get in God's face to the degree I did in that lament, you have to look up and wonder if lightning's going to strike.

VALENTE: Those who are afraid of blaming God often turn inward.

(to Reverend Kyllo): Do people ever tell you they think their disability is due to the fact that they're sinful, that they're being punished?

Rev. David KylloREVEREND KYLLO: Yes, I think that people want a sense of forgiveness for what has happened. Sometimes a person who's been in an accident or something says, "I deserve this. This had to happen to me."

MS. BETENBAUGH: We humans are eager to place blame in order to make sense out of the senseless. The only reasonable place to place that blame then is on the victim. "What did you do that made God so mad?"

VALENTE: At the same time, some patients and their families say they grow stronger in their faith, not weaker. Taylor Reidl, the little girl who had gone into toxic shock, is now beginning to speak again, though her prognosis is unclear.

(to Joe Reidl, father of Taylor): How does a parent cope with something like this?

Joe and Taylor ReidlJOE REIDL: We've definitely become more religious. My wife was more religious than I, but I definitely believe that God wanted Taylor here, and that is why Taylor is here today. I cope by praying and seeing the progress she's made in such a short time frame.

DR. KYLLO (in prayer): Gracious Lord, we give you thanks for being with Dan.

VALENTE: Daniel Kaulback has no memory of the morning when his jeep flipped over, throwing him free, then rolling over him. Paralyzed, he has only partial use of his left arm and hand. He says his ordeal has brought him closer to God.

MR. KAULBACK: I'm closer to Him now than I've probably been for a very long time. But never angry or upset. My faith is too strong for that.

VALENTE: Closer in what ways?

Mr. Kaulback and Rev. Kyllo prayMR. KAULBACK: I pray to Him more often, speak to Him more often, think of Him more often.

REVEREND KYLLO: There's more thinking per square inch in a hospital than there ever would be in a university or college, because people oftentimes lay there and count the dots on the ceiling. They have time to think about their faith.

VALENTE (to Ms. Betenbaugh): For a person of faith with a serious disability, what's the most painful thing for them?

MS. BETENBAUGH: The fact that other people assume that it's related to lack of faith. If you only had enough faith you'd walk again, or you'd be healed if you could just believe enough or trust enough.

VALENTE: There is anger, there are questions, there is guilt, at least for a time. Above all, there is the wish to be accepted as a person like everyone else. And through it all, a cry for help.

MS. BETENBAUGH (reading from poem): We want angels of mercy. Mercy to end the unremitting pain; to stop the infernal, eternal twitching and jerking; to open the ears; to restore the eyes; to walk and leap and dance. We want mercy. Here is our prayer. Hear our prayer.

VALENTE: For RELIGION & ETHICS NEWSWEEKLY, this is Judy Valente in Chicago.

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