Life on Wheels (2 page)

The human spirit in each of us gives us a remarkable capacity to adjust to traumatic change. We learn that our spirit is whole and unaffected—and has nothing to do with the ability to walk. Or use our hands. Or speak clearly. We learn that we can survive and thrive on wheels, just as well as we could on our feet. Thousands and thousands of people prove this point every day, but the wider society still has a way to go to take full notice.

There is a huge gap between the way our culture views disability and the truth of the experience. More than 54 million Americans are thought to have a disability that significantly affects their lives. There are 1.7 million regular wheelchair users in the United States. Disability awareness and advocacy are extending throughout the world, as people everywhere choose to be active and independent. People with disabilities of ranging degrees of impairment are getting on with having a life—working, marrying, traveling, playing sports, being full members of their community. They have various limitations to deal with, but most will tell you that any difficulties they would ascribe to their disability are more about misguided cultural attitudes and a political and architectural environment that places unnecessary obstacles in their way.

People with disabilities are not “broken”; neither are they heroes. Like everybody, people with disabilities are simply human.

This book offers an initial road map to the lifelong, complex, and fascinating road of the disability experience. This book is primarily a guidebook for those with a mobility disability, with practical information about how to adapt the home, choose a wheelchair, explore sexual identity, optimize health, and more. This book is designed to help people make their adjustments sooner and more completely by explaining how one adapts to disability, and by addressing misconceptions that only delay one’s ability to adapt. Throughout it I have tried to foster the principles of choice, of control, and of everyone’s right to pursue their interests and convictions.

Life on Wheels
is also an effort to explain that inclusion is an innate right for everyone and that people with disabilities are excluded for reasons not based on a balanced or realistic understanding of what is possible. It’s time our world caught up with the reality, closed that gap, and allowed millions of people with disabilities to play their full role in society. A modern disability movement of spirited advocacy on the part of people with disabilities has already made tremendous progress toward that end. The disability movement has become increasingly sophisticated and accomplished; the future will only continue to brighten for those of us living a
Life on Wheels
.

I’ve been living the experience since I fell out of a tree and injured my spinal cord in 1973 at the age of 18. After 13 weeks of hospitalization and rehabilitation I went on to college, obtaining an education in architecture; I have had an active professional life as a graphic artist, manager, and consultant. Since the original publication of
Life on Wheels
in 1999, I have devoted myself to being a communicator about disability issues, having published a total of four books and speaking extensively across the U.S. at rehab centers, universities, and a wide array of conferences, meetings, and businesses. I have kept up my sidelines as a musician, juggler, and performer. I have traveled, moved to California, married and divorced, married again and together with my wife raised an incredible yellow Labrador retriever puppy, pursued spiritual interests, developed enduring and deep friendships, and given and received support from my family.

Well, you get the idea. It’s been a full life, marked by the whole range of experience that is the nature of being human—ups and downs, successes and failures. Not being able to walk has really been a pretty small part of it, in a way. In other ways, my paralysis essentially defines who I am.

This book comes from my desire to use my skills as a writer to convey the truth of the disability experience, but it has also been a personal process of facing my own disability identity. I was a “mainstreamer.” On a certain level I knew that I was not comfortable being seen in the world as having a disability. I wanted to appear as “normal” as possible, perhaps understandably because I had eighteen years of nondisabled identity still inside me. I pursued my personal interests and goals, and had little interaction with other chair riders.

But writing this book has deepened my sense of just how much I have in common with this large population of people with disabilities. We are not seen fully for who we are, but are excessively defined in the world’s eyes by a mistaken conception of the meaning of our disabilities—rather than the deep and universal truth of our souls. In the years since beginning this book, and the wide range of experience I’ve had since as a writer, speaker, and advocate, my own relationship to my disability and how it is integrated in my life has changed dramatically. This is exactly the effect I hope this book will have on you.

These pages come all the more to life thanks to the many personal stories and experiences included throughout. Some are in response to questions posted on my web site and others were drawn from online discussions, all used with kind permission for them to be quoted here. My sincere appreciation to the following people for sharing their heartfelt insights: Blane N. Beckwith, Blaze Henry Birinyi, Chris Bourne, George Buckner, Steven Edwards, Michelle Gallagher, Rebecca Gavin, Annette Hanna, Steve Hegg, Gary Hervey, Pauline Horvath, Paul and Jill Jacobs, Erika Jahneke, Jesse Kaysen, Dawn Kellman, Warren King, Douglas Kruse, Emmett S. Land, Constance Laymon, Linda Janine Lipe, Leeya Lowe, Kimber Mangiafico, Tracy L. Mankins, Francois Matte, Bob Mauro, Stan Melton, Carol Swedberg Meyer, Anet (AMARIS) Mconel, Lois Klesa Morrison, Tamar Magenta Raine, Dylan Ryall, Gary Schooley, Gale See, Gary Shakerdge, Marjie Smith, Viki Solomon, RN, Michael Warner, Holly Waters, Chester M. Worwa, and those who wish to remain anonymous.

Those unfortunate enough to be included on my email list got a recruiting request to be on the “Tricks of the Trade Team” for
Life on Wheels
II. The following generous souls took the time to contribute their unique insights and experience which are also to be found throughout the text. Much appreciation goes to Cheryl Angelelli, Bart Brophy, Anthony Tusler, Bruce Cameron, Art Blaser, Adrian Dieleman, Erin Ryan, Santina Muha, Jaehn Clare, Jack Osborne, Patrick Kenneally, Paul Tobin, Rosemarie Rossetti, Judi Rogers, and Yvette Cenerini.

A number of very gracious souls took time from their busy schedules to lend support throughout the writing process. Special thanks to Ron Cohen, Barry Corbet, Tim Gilmer, Carol Gill, Deborah Quilter, Sam Maddox, Stephen Rosenbaum, and Mitch Tepper, with particular appreciation to Dr. Wise Young, for their ongoing and extremely generous help as the book evolved.

One of the most satisfying parts of the work was the process of interviewing people, including healthcare professionals at the forefront of their particular domain of the disability experience. For their openness and willingness to be quoted throughout these pages I thank Alex Barchuk, MD; Cynthia Bishop; Michael Boninger, MD; Mary Lou Breslin; Doe Cayting; Jim Cesario; Dennis Choi, MD, PhD; Paul Church, Ron Cohen, MD; Marcel Dijkers, PhD; Saunders Dorsey, Esq.; Jeff Ewing; Ann Marie Fleming, MFCC; Carol Gill, PhD; Sheldon Ginns; Jody Greenhalgh, OTR; Bob Hall; Deborah Kaplan, Esq; Naomi Kleitman, PhD; Sandra Loyer, MSW; Ron Mace; Linda Mona, PhD, Providencia Morillo; Edward Nieshoff, MD; Linda Noble, PhD; Margaret A. Nosek, PhD; Richard Patterson; Uli Salas, PT; Marco Saroni; Michael Scott, MD; Bonnie Sims; Denise Tate, PhD; Louis Tenenbaum; Mitch Tepper, MPH; and Janie Whiteford.

Special thanks to my colleagues in the National Spinal Cord Injury Association, for whom I gained even more experience as a writer and editor through my stewardship of the NSCIA newspaper, SCI Life. I treasure the partnership of Marcie Roth, Eric Larson, and Tari Susan Hartman-Squire (who also pitched in early with promotional efforts for
Life on Wheels
) and the irreplaceable Harley Thomas, whom we lost in 2007. They also saw fit to honor me with induction into the Spinal Cord Injury Hall of Fame in 2007 as a Disability Educator. The work is all about service to people with disabilities, but it sure felt great to get this incredible affirmation from my community of professional peers.

Much appreciation to Joe Canose, director of the Christopher and Dana Reeve Paralysis Center, who has so generously provided sponsorship for me to speak around the country at rehab centers and to students in university programs of occupational and physical therapy since 2002, and to the PRC’s Angela Cantillon, for handling so many important details of this great program.

And to Jeff Leonard, publisher of
New Mobility
magazine for his cosponsorship of the Reeve program and for his partnership in my other book project,
From There to Here: Stories of Adjustment to Spinal Cord Injury
.

I am, as always, deeply blessed by the enduring love and support of my family and friends: Margi and Morry Opperer, Carolynn and Stacey Karp, Iris and Glen Goldstrom, Sylvia Baker, Mark Glasgow Johnson, Peter Winchell, David and Kate Downey, Bob and April Garrity, Dieter, Lynne, Sophie, and Lena Gloeckler, Jessica Jones, Alan and Elena Woontner, Frish Brandt, Richard Knight and Judith Lynch, Lawrence Elkus, Daya Waldman, Laurie Brown, the Malls, the Reveres, the Cassidys, Rob Robb, Lori Simon-Rosinowitz, Patricia Gleeson, Katherine Halsig, PT, Sherrie Foster, OT, and Oscar and Sarah Ichazo. And, above all, my wife, Paula Siegel.

This book would not exist without the patience, experience, wisdom, and support of my original editor at O’Reilly & Associates, Linda Lamb, who sought me out as a writer, and campaigned within O’Reilly to produce the original series of Patient-Centered Guides. She skillfully guided me through the mysterious straits and whirlwinds of first time authorship, and I am much the better writer for it. To the degree that this new edition has risen to an even higher level, it owes to how I have continued to grow as a writer and editor myself thanks to Linda’s mentorship.

For this new edition, Noreen Henson deserves my deep appreciation for her belief in the great value of this book and for her desire to see it reach the wider audience that the first edition had yet to find. Thank you, Noreen, for your commitment, for keeping me going on the updated manuscript, and for the vanilla latte at Starbucks as it rained down in Manhattan.

Despite the inspiration and contributions of so many, any errors, omissions, misstatements, or flaws in the book are my own.

Lastly, to people with disabilities everywhere, please accept this work with my prayers that it make a positive difference in your lives. I hope, at least, to have given you cause to consider that your boundaries are a little farther out than you thought.

Because you are a wheelchair user, optimizing your physical capacity and learning independence-enhancing skills are the keys to reaching the full life potential that your body and medical condition allow. After your having acquired a traumatic disability, a rehabilitation hospital or clinic is the place where you develop these abilities. It is also a place with which you establish and keep a relationship for maintaining your health, receiving specialized medical support, or possibly, where you participate in a research study. It is a place of hard work, unique relationships, and challenges and opportunities at every level of your life—emotionally, physically, intellectually, socially, and, for some, financially.

The rehabilitation process is designed to reduce the restricting effects of disability so that you can enjoy life again and adapt to physical changes. Do your best to make the most of it. Your time there is brief, and you may not get another chance to work with a group of highly trained professionals assembled to help you adapt to your disability.

Rehab is a place of safety, where you have the benefit of a controlled environment in which to do the work of returning to your life on the outside. Being in rehab is also a challenging process of considerable adjustment and emotion.

This woman with an L1 spinal cord injury expresses the dichotomy:

Rehab is a chance to explore possibilities. A person who has experienced a paralyzing stroke, spinal cord injury, or traumatic brain injury, for instance, might walk out with braces and crutches or using a walker. Or you might wheel out. You and your medical team should carefully consider what is physically possible and set your goals accordingly—with a little room left for that occasional miracle.

Dr. Michael Scott of the Rancho Los Amigos Center in southern California tries to be realistic when people with brain or spinal cord trauma ask him the “cure” question:

Dr. Wise Young, Director of the Neuroscience Center at Rutgers, State University of New Jersey, is concerned that some rehab centers are too pessimistic when it comes to recovery from spinal cord injury: