Christianity and the Art of Wheelchair Maintenance: A Dialectical Inquiry at the End of the World

By Stephen Faller

After twenty years, Stephen Faller shares his journey into seminary and ordained ministry. This book reveals the story of how someone with a lifelong disability, cerebral palsy, might find his way into ministry as a hospital chaplain; there is a certain irony in that. While particular in its own right, this story will speak to anyone in college or graduate school studying one of the many disciplines hoping to make the world a better place.

Through narrative and dialogue, Faller engages philosophers and theologians alike. This is an intimate text that seeks to integrate mind, body, and spirit that situates itself more beyond the margins than as marginalized.

Just as Faller's own narrative is contextualized by disability, this personal work is contextualized in our polarized and politicized culture, as it considers the meaning of ministry for a contemporary time. His is an embodied text that speaks to a multicultural society, even if that body carries brokenness and even if that society is divided.

• Language: English
• Publisher: Cascade Books
• Release date: Aug 8, 2018
• ISBN: 9781532634673

Stephen Faller

Stephen Faller is a board-certified chaplain and a clinical educator of the Association for Clinical Pastoral Education, and a diplomate of the College of Pastoral Supervision and Psychotherapy in Hopewell, NJ. He is the author of Beyond the Matrix (2004), Reality TV (2009), The Art of Spiritual Midwifery (2015), and Christianity and the Art of Wheelchair Maintenance (2018). He has a master of divinity from Duke Divinity School and a master of theology from Princeton Theological Seminary.

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Christianity & the Art of Wheelchair Maintenance

A Dialectical Inquiry at the End of the World

Stephen Faller

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CHRISTIANITY AND THE ART OF WHEELCHAIR MAINTENANCE

A Dialectical Enquiry at the End of the World

Copyright © 2018 Stephen Faller. All rights reserved. Except for brief quotations in critical publications or reviews, no part of this book may be reproduced in any manner without prior written permission from the publisher. Write: Permissions, Wipf and Stock Publishers, 199 W. 8th Ave., Suite 3, Eugene, OR 97401.

Cascade Books

An Imprint of Wipf and Stock Publishers

199 W. 8th Ave., Suite 3

Eugene, OR 97401

www.wipfandstock.com

paperback isbn: 978-1-5326-3466-6

hardcover isbn: 978-1-5326-3468-0

ebook isbn: 978-1-5326-3467-3

Cataloguing-in-Publication data:

Names: Faller, Stephen.

Title: Christianity and the art of wheelchair maintenance : a dialectical enquiry at the end of the world / Stephen Faller.

Description: Eugene, OR: Cascade Books, 2018 | Includes bibliographical references.

Identifiers: isbn 978-1-5326-3466-6 (paperback) | isbn 978-1-5326-3468-0 (hardcover) | isbn 978-1-5326-3467-3 (ebook)

Subjects: LCSH: Dialectic—History. | Memoir.

Classification: B398.D5 .F52 2018 (print) | B398.D5 (ebook)

Manufactured in the U.S.A. August 13, 2018

All biblical quotations are from the Revised Standard Version of the Bible, copyright 1952, [2nd edition, 1971] by the Division of Christian Education of the National Council of the Council of the Churches of Christ in the United States of America. Used by permission. All rights reserved.

Table of Contents

Title Page

Chapter 1: Economy

Chapter 2: Worship

Chapter 3: Marriage

Chapter 4: Machines

Chapter 5: Pain Management

Chapter 6: Relationship

Chapter 7: Disease and Death

Chapter 8: Reading

Chapter 9: Dialogue

Chapter 10: Sounds, Smells, and Sights

Chapter 11: Purposeful Movement

Chapter 12: Writing

Recommended Reading

For Heather

because there are not enough words

to say everything that needs to be said,

so I say this is for you.

Chapter 1

Economy

To tell what it really is

would be a theme for a divine and a very long discourse;

what it resembles, however,

may be expressed more briefly and in human language.

Socrates

I was in college at the time, in the middle of my own emotional winter, and my head was hungry for all kinds of inspiring notions. I wanted to seize the day, and live life to the fullest, and make the most of everything. And I was headed out across the campus. I got in my wheelchair. If you hit the door right, it bounces off the stopper and it will close behind you.

I hit it right.

This is a sensorial experience. The bump will be firm, and that will be felt through the steering and the whole scooter. The sound of the motor has a variable pitch, depending on how fast you are going. Bounce it too fast and too hard, and the door will just slam into you. Too soft, and you will be well through the door and it will remain wide open behind you. Then the door will be very hard to close without the chair getting in the way. You can get a sense of the hit by how the door sounds. Each door makes its own sound, of course, as it hits the chair. Different doors make different sounds against the metal bumper. You get a sense for these things. This door was wood. There is also the spot on the door you’re trying to hit to think about. My suggestion would be closer to the knob than the doorjamb. You really want to use a constant force; steady with the accelerator. It’s a matter of torque.

The battery-powered wheelchair had three wheels. An aggressive marketing campaign in the ’90s has cemented the term scooter. I’ve been using them since the early ’80s. This particular chair was made by an outfit called Ortho-Kinetics, a company no longer in business. This was a front-wheel drive Sierra. It makes a difference. The rear-wheeled drive chairs always lurch forward and you can never cut the turn a full ninety degrees. And when your world is made of dormitories and classrooms, every degree counts. The economy of daily life comes down to inches.

This design worked very well for me for about twenty years. That is a long relationship by today’s standards, and it’s long enough to become intimate with the flaws of the design. I feel a little unfaithful to use the word flaw. It is what it is. A design that is created to accomplish a specific task will therefore have limitations built-in that exclude it from other tasks. Strengths over here are weaknesses over there. But I am being much too abstract and general. With that Sierra, the main problem was in the power line to the motor. The entire motor was built onto the front steering column and the whole motor assembly would swing left and right as needed. But the wires that connected the motor to the battery had to bend and flex with each turn. Eventually, the wires give out, and this is one of the many causes for maintenance and repair.

To be fair, they don’t tell you how to crash through doors. This is not in the manual. It’s not recommended. There might be significantly less maintenance involved if the crashing is kept to a minimum. But somehow, the user of the chair—in this case a college guy—has to live a life. How long do you want to spend getting out the door? How much time and effort and overall energy do you have? It’s about economy. He’s not some hypothetical pilot. He’s a person, with likes and dislikes. He’s got somewhere he wants to go, and he has feelings about how long it’s going to take him to get where he’s going.

The dorms had no elevators, so I was on the first floor. I had one fire door and then the front door to get through. Then I was out into my beautiful night. Such things are important to remember. The outside world is still there. With a disability, a lot of things can get lost in the gap between the inner and the outer world. There are many steps between an idea and its manifestation, so much to think about, so many puzzles to solve.

Fire doors should never be approached the same way as lighter, free-swinging doors. Fire doors are much heavier. Fire is the problem they are designed to solve. This design, however, creates a different problem for me. They either open with you or against you. The doors that open with you are easier by far. You pull up to them gently. This particular chair had wheels on the bumper for situations like this. The door just rolls off of the bumper. But you don’t want to go straight through, because the door will brush against the entire chair, and most likely you as well. Instead, turn into the door as it opens. Give a kick of acceleration. Then jerk the wheel the opposite way, and you should be free and clear.

This door opened toward me. Much harder, but unavoidable in life. Fortunately there was room enough in the corridor so you could open the door without simultaneously moving the chair out of the way, something very hard to do with one hand to hold the door and operate the chair at the same time. Yank the door as hard as you can and get through it before the door shuts. You might have more time if you yank the door less hard, depending on the spring. If the spring is too strong, you will have to block the door with the chair in one extra step, and then scrape through. No problem.

One more door. This one was easy. The college had equipped it with a remote style opener, very much like the old garage-door openers. The range was considerable, and provided me with access to both pranks and acts of generosity, and I enjoyed both.

This stretch of campus was poorly lit. I rolled down the brick entry ramp and turned onto the asphalt. You feel the difference in surfaces through the chair. There were no shocks to speak of, so I kept the tire pressure low to soften the ride. Turning down the path, I heard a familiar popping noise. It sounded like a loose wire, or a wire beginning to break. Wires don’t break right away. The rubber insulation will hold the metal pieces together for a while. This creates a frustrating scenario where the chair functions really well for a while, and then less well, and then the chair doesn’t work at all. Depending on your usage, the whole process can take six months to a year. That’s an average, but I’ve also broken them instantly. The chair made the popping noise right in the turn, and that fits the theory perfectly. The wires must have flexed as the wheel turned, creating the popping sound. There was the slightest loss of power, but then it came right back. Everything should hold together for a while.

I am a little embarrassed to say it in a book about wheelchair maintenance, but I’m a low-maintenance kind of guy. While I have learned much about repairing them and troubleshooting them on the spot, a lot of my knowledge is locked in the theoretical realm simply because I don’t have the dexterity to apply it. So, holding together the wheelchair is something I learned a long time ago. There is always something that could be fixed. Tires go bad. Wires go bad. Batteries go bad. Bolts should be kept tight. And there are many things that can fail. Logic boards, motors, variable resisters. One option is to fix everything at once and keep everything in perfect condition. This is expensive, and will keep your chair in the shop. And while your chair is in the shop, you’ve still got to get around. It is true that it will have to be fixed sooner or later. But, later is later. Besides, wheelchair vendors don’t really like routine maintenance. They tend to work really well with thresholds. Running or not running. And besides, there are no oil changes to be had and no Jiffy Lubes for wheelchairs.

One more thing about the chair. The commodity in question is not wheelchairs or electricity or even money for repairs. It’s time. But this is getting ahead of things.

I have cerebral palsy, and thus, I need the chair. The mechanics of wheelchairs and cerebral palsy are not worlds apart. There is maintenance, problematic wiring, and the need for time. It’s going to take a little explanation.

Cerebral palsy varies from case to case. It’s a lot like having a stroke. Brain damage can affect the entire body. It can cause deafness, blindness, and mental retardation. I got lucky on that. My speech is slurred a little bit, but I don’t have any problem trying to communicate in person. Sometimes the phone is a problem. My trouble with talking was worse when I was younger. The real problem I have with my speech nowadays is that stress shows very easily in my tone. It doesn’t sound stressed; it just sounds like a speech problem. But I know that what’s coming across is stress and strain.

My right side is better than my left. My right arm does very well, it’s almost fully functional. Just a little clumsy. The fingers are a little twitchy. It types well enough. Which it should—the occupational therapists started teaching me to type when I was five. They knew that I would need to type as a life skill, and I remember that when I was a child, I would be taken out of class for special exercises. These exercises consisted of children’s stories about Alice (A) who lived next door to Sam (S) and on and on.

My left arm doesn’t straighten and the hand has trouble opening. The attentive reader may be able to anticipate things here; if I can’t use two hands at once, how can I open the door and operate the wheelchair at the same time? It is a puzzle. But the left hand is not without value. I can use it to hold things that are small. Also, it is probably the most visible aspect of my disability. If I’m sitting, you won’t really notice my legs, but the arm is much harder to hide. Hiding is not ideal, but after a lifetime you begin to build up a number of experiences watching others discover your disability, and the shift in their perception is palpable. I have never really seen the palm of my hand. So, I know the back of my hand better than most. Most of the scars land behind the knuckle of the index finger. For whatever reason, that seems to be the part to catch the ground first.

Neither of my legs works like it should, although I have had them in for repairs. When I was thirteen I had an operation where my hamstrings were cut and lengthened behind each knee. Before the surgery, standing was nearly impossible. After many years, I can now stand and walk short distances. I can also drive a car, which opens up a vast array of opportunities. Until the surgery, I could only get around by crawling. The resulting shift in my consciousness was tremendous. Something changed in me. I don’t know when it happened, but is a difference in the way I experience spaces and move through them. For much of my life, the first three feet of a room was the most important. Now I live in the space from four to six feet. It is a more dynamic demesne, albeit less grounded. It is the difference between earth and air.

This is an overview of my cerebral palsy. This is what you can see. Cerebral palsy is brain damage, usually acquired somewhere in the birth process. I don’t know where the damage is in my brain, and ultimately it is impossible for me to know how much the brain damage affects my perception, since it is my brain that is doing the perceiving. It can be deduced that the right side of my brain has more damage, because each half of the body is controlled by the opposite side of the brain. But there is certainly damage on both sides. Gray matter gives way to shades of gray and ambiguity. It is hard to know where DNA is distinguished from disability. Presumably if my left arm could be rewired to a working brain, given enough reconditioning, it would be normal. But after years of being hooked into my neurology, the muscles have become stiff, limited, and tight. This is why I use a motorized wheelchair. You need both arms for a self-propelled chair.

So the night was exactly what I wanted. The difference between rolling and walking somewhere is hard to convey. Maybe it comes down to continuity. In a wheelchair, there is no stepping over something. You remain in constant contact with whatever surface you are rolling over. Every vibration is telling. After enough time, your subconscious works out a handicapped accessible map to the world you live in. You just know where the bumps and potholes are. It is a larger sense of kinesthesis. And you get where you are going—even in the dark.

That night, I was going to the college track at the football field for an exercise.

When you’re talking about truth it doesn’t really matter where you start.

Metaphors can be helpful, and when you’re dealing with metaphors, you have to realize that you’re not talking about the subject at hand, but something else. It might be helpful to use technical terms. A metaphor is defined as a figure of speech comprised of a vehicle and a tenor, and most importantly, the relationship between them. The vehicle is the arbitrary image that you’re using, and the tenor—as the Latin suggests—is the thing you’re holding onto. Perhaps it is also telling that this tenor is at the root of maintenance.

We will rely on metaphors and analogies a great deal in our time together. If we are going to have any success in exploring Christianity, or even declaring the first truth about human spirituality in general, we are going to depend on metaphor. Naming the sacred and divine requires a language that I don’t have. But if we can enter the world of analogy, and remember that we are in the world of analogy, then I think we can give it a try. This is our adventure into the realm of what it resembles.

When I parked my wheelchair at the track that night, I was obsessed with the one universal truth. What else is college for? It was also during that time of my life that I was becoming well acquainted with Thoreau. Thoreau is a writer from New England in the 1850s. The time period is important because when you read Thoreau, you know he is speaking to you. We are in accord with his Concord; he is speaking to our age. For my part, if I read anyone more than twenty years before him, it may as well be two hundred. Thoreau is our prophet. He is speaking to the American predicament. He exchanges locust and honey for a cabin with piles of his own driving. He reads like an eloquent John the Baptist, running off to the wilderness, crying, Repent! And any reader today will find themselves guilty. As a society we have discounted his warnings, and the Consumer Age has been consumed, fettered, and tethered as never before. Thoreau is the first specialist who saw our dis-ease in its early stages. On the whole, we have judged his prescription too expensive and we have occupied ourselves in the waiting room of the physician for the second opinion. Thoreau’s advice? Cut it off before it spreads.

But the fact that he is our countryman is not the only reason why he reads so fresh and new each time. He is also speaking of higher laws, and higher laws are always new because they still remain untried. What’s more, he is addressing the truth, and if we are interested in the truth, what he has to say will prove interesting. He starts with Economy, and in exquisitely Aristotelian fashion, he begins to subdivide that Economy into four headings: food, shelter, clothing, and fuel. These are the barest necessities; this is what we need to live. He then spells out our relationship to each of these. His underlying recommendation will always be: simplify. These subdivisions are arbitrary. He’s not really talking about food, shelter, clothing, and fuel. These are metaphors, mere vehicles for his tenor. The determined reader, perhaps a college student, will undoubtedly argue with me. How can you say he’s not talking about these things? He goes on for pages and pages! There’s no metaphor here. There’s no analogy here. Thoreau believes that his contemporaries have problems with material goods, and he’s trying to tackle those problems head on.

Yes and no. There are pages and pages of exposition about food, shelter, clothing and fuel. I can’t argue that. But anyone who closes Walden and thinks that it is the last word on diet, real estate, fashion, and gasoline has misunderstood. Thoreau wants to liberate us from these things. Thoreau is aiming at the astral plane. And the careful scholar who reads Thoreau only to come up with a socialist thesis about the redistribution of goods and services (or a libertarian thesis for small government and self-reliance) has sadly missed the point. Long after we stop worrying about food, shelter, clothing, and fuel, Walden will continue to speak to us because it is about truth.

But nothing is without risk. Even Thoreau’s steadfast dedication to the truth can obscure it at the same time. This is the subtle side of metaphor. The shadow side. The dark side of metaphor. Metaphor has a way of setting the stage for everything that follows. Once Thoreau has divided life into four categories, it becomes nearly impossible to imagine the necessities of life in any other way. What else is there? We eat, sleep, spend different kinds of energy, put clothes on, and take clothes off. That’s about it. To take issue with any one point only reinforces the whole structure. Say I have an issue with Thoreau over what he has to say about food. If I argue with him and try to nuance the discussion, then I’m giving my tacit approval of his system of four subdivisions. The place to really argue with him is not in the branches and twigs of his thought, but to get to the root of the thing. So often we spend our rhetoric trying to fix the twigs and leaves of a belief system when what was needed was a Bobcat or backhoe.

Approach the subject any way you like. If Thoreau is likely to predispose us along materialistic presuppositions, let’s conjecture something very different. Let’s suggest that the four elements of our Economy are time, space, spirit, and in this environment, capital. One of the advantages of these four elements is that they can operate in relationship to one another, and offer much more dynamic concepts. With Thoreau, it doesn’t make sense to look at food versus fuel. Or why contrast clothing and shelter? But these elements of time, space, spirit, and capital offer new insights and implications. Time is an important commodity, and we can all appreciate the difficulty in not having enough of it. But there are other avenues for consideration. When we look at time in relation to space, or distance, we now have an implicit awareness of motion. Ultimately we are not trying to talk about four arbitrary elements, we are trying to talk about truth. And the truth is that people and life are dynamic. We are constantly in flux. You cannot step into the same river twice. If we want our four elements to be anchored in truth, we need to make sure our model is capable of incorporating change and motion. After all, most of us are trying to get somewhere and become something greater than we already are.

There are many daily limitations. There are things I can’t do, like just about anything you need two hands for (although you might be surprised how much you can do with one hand). There are also other kinds of limitations I experience; the social implications of a disability are far worse than the physical limitations. But the most painful limitations of all are revealed in the mysterious loss of time. Everything takes longer. Some of the tasks are harder because I have fewer tools at my disposal, but even straightforward tasks take more concentration. Moving an object from one space to another can require a lot of mental focus. Carrying an open container of liquid is out of the question altogether, and this is harsh news for a coffee drinker. Because the tasks are slower going, the mental fatigue is increased because I have to think about it until it’s done. And lastly, there are more tasks to do. I need to make sure that my wheelchairs are working, as well as all of the other gadgets that complete the Rube Goldberg drawing of my life.

I am not the only one to feel the pinch of time. We are all trying to do as much as we can. Perhaps the only thing different about me is that my time gathers and collects in pockets. For example, there were many times when I would be running late for class. After the wheelchair has reached its top speed, there’s not much to do but wait for the elapse of time. The adrenaline in my blood does nothing to accelerate the chair, so in these clumps of coagulated time, I can think about things, like the nature of time itself.

Relatively speaking, modern life moves as fast as it can, with overnight delivery, email, texting, news cycles that never end, social media that is always mediating, and thousands of instantaneous expectations. We may call this constant rush the speed of life. My fastest speed always seems to be less than the speed of life. It is